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COPING WITH ANXIETY, DEPRESSION, BURDEN AND QUALITY OF LIFE IN INFORMAL PRIMARY CAREGIVERS OF COMMUNITY-DWELLING INDIVIDUALS WITH DEMENTIA

 

M. Muscat1, C. Scerri2

 

1. Department of Gerontology, Faculty for Social Wellbeing; 2. Department of Pathology, Faculty of Medicine and Surgery, University of Malta, Msida, Malta MSD 2080.

Corresponding Author: Charles Scerri PhD, Department of Pathology, Faculty of Medicine and Surgery, University of Malta, Msida MSD 2080, Malta; Tel.: +356 23402905; Fax: +356 21320281; E-mail: charles.scerri@um.edu.mt

J Aging Res Clin Practice 2018;7:128-135
Published online October 15, 2018, http://dx.doi.org/10.14283/jarcp.2018.22

 


Abstract

Objective: This study aimed to investigate how informal primary caregivers of individuals with dementia living in the community cope with caring-related measures of anxiety, depression, burden and quality of life. Participants and Design: Participants included 60 informal caregivers (23 males and 37 females) of community-dwelling individuals with dementia who attended a state-run geriatric day hospital in Malta. Caregiver measures included the Hospital Anxiety and Depression Scale, the World Health Organization Quality of Life–BREF and Brief COPE questionnaires, and Zarit Burden Interview. The Mini Mental State Examination and Barthel Index of Activities of Daily Living scores were used to determine the degree of cognitive impairment and performance in activities of daily living of care-recipients. Results: Informal caregivers experienced anxiety and depression with both emotional distress states negatively affecting all quality of life domains. Depression and burden experienced by informal primary caregivers showed a strong association with individuals with dementia-related variables such as age, cognitive impairment and activities of daily living scores. The use of dysfunctional coping strategies was found to be related to caregivers’ emotional distress, low quality of life and burden. Conclusion: The findings indicate that informal primary caregivers experienced anxiety and depression, had a lower quality of life, and feel burdened during their caring role. However, caregivers making use of emotion-focused coping strategies were found to be protected against emotional distress. The results highlight the need of providing support services aimed at promoting the psychological wellbeing of informal carers of community-dwelling individuals with dementia.

Key words: Caregiver, coping, dementia, emotional distress, quality of life.


 

Introduction

Dementia is a clinical term referring to a group of brain disorders characterized by progressive deterioration of cognitive abilities. In 2015, it was estimated that 1.5% of the population in Malta had dementia, a figure that is projected to more than double in the next 30 years (1). This, in conjunction with a demographic shift favouring a progressive increase in the elderly population, will add to a growing burden on family members who, in the majority of cases, provide informal care for these individuals at home (2).
At present there is no cure for the most common forms of dementia and consequently the main focus lies in promoting the wellbeing and providing optimal quality of life for the individual with dementia and their caregivers (3). Previous research has demonstrated that high levels of neuropsychiatric symptoms in dementia caregivers leads to a reduction in their quality of life (4) and caregiver burden is mostly related to the caregiver ability to cope with the situation (5). A number of coping strategies and styles adopted by dementia caregivers have been proposed with those based on emotional support and problem-focused strategies being associated with caregiver wellbeing and positive outcomes (6-8).
The main objective of this study was to investigate how coping strategies and styles used by informal primary caregivers caring for an individual with dementia living in the community influence their levels of anxiety, depression, burden and quality of life. This category of caregivers was selected as previous research have shown that, in Malta, rather than resorting to institutionalization of the person with dementia, a unique model of care based on reliance on families through a rotation pattern of care by different family members is preferred (2).  Therefore, the identification of predictive factors that enhance the wellbeing of caregivers of individuals with dementia living in the community would not only ensure that health and social support programmes are designed to meet the desired needs but would further delay institutionalization of the care-recipient (9).

 

Methods

The study was conducted in Malta from early January to the end of May 2015. Participants were informal primary caregivers of individuals with dementia attending a state-run geriatric day hospital who had received a formal diagnosis of dementia by a medical specialist. A convenience sample of caregivers (n = 74) was selected with selection criteria being attendance to the day hospital by the individuals with dementia, individuals with dementia living in the community, caregiver residing in the same or separate household and being the primary care provider. Participants were contacted by telephone following which 60 agreed to take part in the study. Sociodemographic data of caregivers included age, gender, occupation, relationship with individuals with dementia, marital status, level of education, whether they were living with the individuals with dementia, duration of caregiving in years, number of contact hours per day and whether they were formally diagnosed with anxiety/depression during their caregiving role. Information on individuals with dementia included age, gender and dementia type. The levels of cognitive impairment and activities of daily living of individuals with dementia were based on the  Mini Mental State Examination (MMSE) (10) and Barthel Index of Activities of Daily Living (BI-ADL) (11) scores measured by a geriatric medical specialist prior to study commencement.
The research instruments used in assessing caregivers included the Hospital Anxiety and Depression Scale (HADS), the World Health Organization Quality of Life–BREF (WHOQOL-BREF) and Brief COPE questionnaires, and Zarit Burden Interview (ZBI). The HADS consists of two seven–item subscales, one related to anxiety and the other to depression (12). Each item carries a four-point scale (0-3) with the total possible score for both anxiety and depression ranging from 0-21. Scores are categorized as normal (0-7), mild (8-10), moderate (11-14) and severe (15-21). The WHOQOL-BREF comprises 26 items grouped under domains for physical health, psychological health, social relationships and environmental health (13). Each item is rated on a 5-point Likert scale with higher scores denoting better quality of life. The Zarit Burden Interview consists of 22 items with a 5-point Likert scale ranging from 0 (never) to 4 (nearly always) (14) whereas the Brief COPE measures a number of different coping strategies and consists of 14 subscales with two questions per style with a 4-point Likert scale ranging from 1 (I haven’t been doing this at all) to 4 (I’ve been doing this a lot) (15). The coping strategies are divided into 3 domains: emotion-focus (use of emotional support, positive reframing, acceptance, religion, humour), problem-focus (active coping, planning, use of instrumental support) and dysfunctional coping (venting, denial, substance use, behavioral disengagement, self-distraction, self-blame) (16).
All interviews with informal primary caregivers were carried out face-to-face in English language at the participants’ residence. The study was approved by the Faculty of Social Wellbeing Ethics Committee and the Research Ethics Committee of the University of Malta. Permission was also granted by the management of the day hospital. Participants were guaranteed confidentiality and anonymity and were free to withdraw at any stage of the interview without giving a reason. Written consent was obtained from all participants. Depending on cognitive impairment, consent from individuals with dementia was obtained either directly or by proxy.
Descriptive statistics were used to summarize sociodemographic and clinical data of participants as percentages, means and standard deviation (SD). Relationships between anxiety, depression, quality of life, burden and coping scores with sociodemographic characteristics and clinical data were analysed using Student’s t-test for two groups of data and one factor ANOVA with post hoc comparisons using Tukey for multiple groups. In the event that the data were not normally distributed as determined by the Shapiro-Wilk test, the Mann-Whitney U test was applied.
To study the degree to which anxiety and depression, quality of life and burden experienced by caregivers was related to their coping strategies and styles, the Pearson’s correlation coefficient (r) analysis was conducted. All research instruments used for caregivers’ measures were assessed for internal consistency using the Cronbach’s alpha test. Data analysis was conducted using PASW Statistics (version 20.0) with significance level set at 0.05.

 

Results

Characteristics of participants

Descriptive characteristics of individuals with dementia and their informal primary caregivers are presented in Table 1. Care-recipients had a mean age of 77.5 years (range: 46 – 92) and showed moderate functional dependency levels. With respect to the severity of cognitive function, 36.7% had mild, 25.0% moderate and 38.3% severe cognitive impairment. A significant positive correlation was observed between MMSE and BI-ADL (r = 0.801, p < 0.001) indicating that individuals with dementia having severe cognitive impairment were the most functionally dependent.
Informal primary caregivers were mostly females, married, had a secondary level of education, unemployed and living in the same household. The duration of caregiving role varied from 1 to 25 years with an average of 4.5 years whereas the average number of contact hours spent in daily caregiving was 16.2 hours. A third of participants indicated that they spend 24 hours per day in their caregiving role.

Table 1 Sociodemographic characteristics and clinical data of individuals with dementia and their informal primary caregivers (AD, Alzheimer’s disease; BI-ADL, Barthel Index of Activities of Daily Living; ipCG, informal primary caregiver; IWD, individual with dementia; LBD, Lewy-body dementia; MMSE, Mini-Mental State Examination; VaD, vascular dementia)

Table 1
Sociodemographic characteristics and clinical data of individuals with dementia and their informal primary caregivers (AD, Alzheimer’s disease; BI-ADL, Barthel Index of Activities of Daily Living; ipCG, informal primary caregiver; IWD, individual with dementia; LBD, Lewy-body dementia; MMSE, Mini-Mental State Examination; VaD, vascular dementia)

 

Informal primary caregivers’ anxiety and depression

The mean anxiety score for caregivers was found to be significantly higher than the mean depression score (F = 8.594, p < 0.001) denoting that caregivers experienced more anxiety than depression during their caring role (Table 2). Furthermore, anxiety and depression were found to be significantly correlated (r = 0.777, p < 0.001) indicating that caregivers with high anxiety scores tended to have higher levels of depression. Caregivers who had a lower level of education, cared for individuals with dementia with low cognitive and functional scores, and formally diagnosed with anxiety/depression during the caregiving role experienced higher levels of anxiety and depression.

Table 2 Relationship between anxiety, depression, quality of life and burden scores with sociodemographic characteristics and clinical data of individuals with dementia and their informal primary caregivers (α, Cronbach’s alpha; BI-ADL, Barthel Index of Activities of Daily Living; ipCG, informal primary caregiver; IWD, individual with dementia; MMSE, Mini-Mental State Examination)

Table 2
Relationship between anxiety, depression, quality of life and burden scores with sociodemographic characteristics and clinical data of individuals with dementia and their informal primary caregivers (α, Cronbach’s alpha; BI-ADL, Barthel Index of Activities of Daily Living; ipCG, informal primary caregiver; IWD, individual with dementia; MMSE, Mini-Mental State Examination)

 

Informal primary caregivers’ quality of life

As indicated in Table 2, caregivers who were employed, had a post-secondary level of education and have not been formally diagnosed with anxiety/depression during their caregiving role had higher quality of life scores. Amongst the domains tested, the two highest average standardised scores were reported for the environment and psychological domains with social relationships scoring the lowest. The social relationships domain was found to be significantly correlated with the age of the individual with dementia (r = 0.264, p = 0.042) and caregiver (r = -0.277, p = 0.032) and related to whether the caregiver was living in the same household, relationship with the individual with dementia and the educational status of the caregiver. The latter was also found to similarly affect the environment domain.

Informal primary caregivers’ burden

Approximately half of the caregivers participating in this study (46.7%, n = 28) indicated that they experienced moderate to severe/severe burden whilst caring for an individual with dementia. A significant inverse correlation was found between the age of the individual with dementia and the burden score (r = -0.299, p = 0.020) suggesting that the younger the individual with dementia, the greater the burden on the caregiver. A low BI-ADL score and a formal diagnosis of anxiety/depression in the caregiver were also found to be significantly related to higher caregiver burden (Table 2).

Informal primary caregivers’ coping strategies

The mean rating scores for emotion-focus and problem-focus strategies were similar and significantly higher than dysfunctional coping (p < 0.001) denoting that the latter was the coping strategy that was used the least by the caregivers (Table 3). Moreover, dysfunctional coping was inversely correlated with the age of the care-recipient (r = -0.268, p = 0.038) and significantly related to the increasing number of hours/day spent in caring and the presence of a formal diagnosis of anxiety/depression in the caregiver. Out of the 14 coping styles, the most frequently used were acceptance and active coping with substance abuse scoring the lowest.

Table 3 Relationship between coping strategies and styles with sociodemographic characteristics and clinical data of individuals with dementia and their informal primary caregivers. Cronbach’s α for the Brief COPE = 0.713 (BI-ADL, Barthel Index of Activities of Daily Living; ipCG, informal primary caregiver; IWD, individual with dementia)

Table 3
Relationship between coping strategies and styles with sociodemographic characteristics and clinical data of individuals with dementia and their informal primary caregivers. Cronbach’s α for the Brief COPE = 0.713 (BI-ADL, Barthel Index of Activities of Daily Living; ipCG, informal primary caregiver; IWD, individual with dementia)

 

Association between informal primary caregivers’ measures of anxiety and depression, quality of life, burden and coping strategies and styles

In informal primary caregivers, higher levels of both anxiety and depression were found to be related to a reduction in the overall quality of life and increased burden (Table 4). Furthermore, caregivers who were using dysfunctional coping strategies experienced higher levels of anxiety and depression. The latter were also found to be positively correlated with the coping styles of planning, behavioral disengagement, denial and self-blame. Conversely, the use of acceptance, positive reframing and self-distraction were related to diminished emotional distress. Caregivers who reported high levels of burden had lower quality of life scores with all domains being affected except physical health. Burden scores were also found to be high in caregivers adopting dysfunctional coping strategies with relationships to coping styles similar to those reported for anxiety and depression.

Table 4 Correlations between anxiety, depression, quality of life, burden and coping strategies and styles of informal primary caregivers of individuals with dementia (WHOQOL-BREF, World Health Organization Quality of Life-BREF; ZBI, Zarit Burden Interview). Only significant Pearson correlation coefficient (r) values reported (* P < 0.05, ** P < 0.01, *** P < 0.001)

Table 4
Correlations between anxiety, depression, quality of life, burden and coping strategies and styles of informal primary caregivers of individuals with dementia (WHOQOL-BREF, World Health Organization Quality of Life-BREF; ZBI, Zarit Burden Interview). Only significant Pearson correlation coefficient (r) values reported (* P < 0.05, ** P < 0.01, *** P < 0.001)

 

Discussion

To the best of our knowledge, this is the first investigation that explored anxiety, depression, burden, quality of life and coping strategies used by informal primary caregivers of community-dwelling individuals with dementia in Malta. Determining the psychological wellbeing and type of coping strategies adopted by this category of caregivers could aid in developing community services that address their needs. This is in agreement with the Call for Action adopted by the First WHO Ministerial Conference on Global Action Against Dementia that emphasised that policy interventions should be sensitive to the specific needs of people living with dementia and their caregivers (17).
The findings reported here showed that more than half of participating caregivers experienced anxiety and with a quarter feeling depressed. Similar to other findings (18, 19), caregivers having higher levels of education scored significantly lower in anxiety and depression possibly indicating that education might act as a protective effect. Of note was the absence of depression in the two-thirds of informal primary caregivers. People caring for individuals with dementia respond to depression in different ways and at different times. They might experience emotional distress soon after diagnosis of dementia in their relative, whereas in others as dementia progresses to its severe stage and the duration of care increases (20). However, the latter was not supported by the present findings in which the levels of anxiety, depression, burden and quality of life in informal primary caregivers were not found to be related to the number of years and number of hours per day spent in caregiving. Even though most caregivers participating in this study appeared to experience lower levels of depression, more research is needed to determine how the changing course of dementia might impact the caregiver emotional response in the local context.
Factors that strongly impacted caregiver burden in this study were the younger age of the individual with dementia, loss of functional status and a formal diagnosis of anxiety and depression in the caregiver. Although caregivers taking care of an individual with dementia with greater functional dependency experienced higher burden levels, no association between burden and patient cognitive scores was found possibly suggesting that deterioration in individuals with dementia abilities to take care of themselves leads to higher caregiver burden compared to cognitive deterioration. Similar trends were observed in other countries in which the direct influence of patients’ cognition on caregiver burden is limited with the patients’ functional abilities being the main predictor for burden (21). Contrasting previous data (22, 23), the age of the caregiver was not found to be related to burden. Rather, the age of the care-recipient showed a significant effect, with a younger age associated to higher caregiver burden. This is not surprising considering that young individuals with dementia pose additional challenges on their primary caregivers such as lack of appropriate access to specialized care as well as work and additional family commitments (24).
In caregivers, dysfunctional coping strategies were found to be significantly related to anxiety and depression, the duration of caregiving and the age of the care-recipient. Emotion-focus coping strategies, with coping styles that included acceptance and positive reframing, were preferred by the majority of caregivers and this may have contributed to a reduction in the anxiety and depression scores. Conversely, dysfunctional coping was mostly related to an increase in caregiver burden. Of note was that positive reframing coping style, in which stressful events are redefined in order to make them manageable (25), showed a significant correlation with emotional distress status, quality of life and caregiver burden. The ability to use this coping style in the present study was possibly related to the cohort cultural context, in which dementia care is a family affair and a shared care arrangement between family members as a form of respite is the norm (2).
The current study has a number of limitations. The WHOQOL-BREF instrument was not specifically developed for caregivers of individuals with dementia, although there are precedents for its use in this population (26). The study made use of individuals with dementia and their informal primary caregivers attending a day hospital which may not be representative of the dementia caregiver population in Malta. Sample selection was not randomised and thus the possibility of selection bias cannot be excluded. The modest sample size may have also limited statistical power.
In conclusion, the results reported here indicate that informal primary caregivers of individuals with dementia living in the community are more likely to suffer from emotional distress, experience burden and have a lower quality of life. However, those caregivers who use emotion-focused strategies were found to be protected against emotional distress. This continues to highlight the need of identifying multi-component interventions that support informal caregivers in maintaining a lifestyle that improves their quality of life. Knowing that in Malta dementia care in the community mostly follows a shared familial arrangement, caregiver support should be tailored to offer caring styles that adjust according to the caregiver circumstances and needs. Furthermore, assessing the psychological wellbeing of informal caregivers of individuals with dementia together with providing the necessary information on coping strategies that would support their caregiving role should form part of the dementia-management process.  The present research continues to add to the recommendations of the National Strategy for Dementia in the Malta in which the provision of holistic support services to community-dwelling individuals with dementia and their informal caregivers is one of the main priorities to be addressed (27).

 

Acknowledgements: The authors would like to thank the caregivers and individuals with dementia who participated in the study.

Conflict of interest: none

Funding: none

Ethical standards: Ethical approval for the study was granted by the Faculty of Social Wellbeing Ethics Committee and the Research Ethics Committee of the University of Malta.

 

References

1.    Scerri A, Scerri C. Dementia in Malta: New prevalence estimates and projected trends. Malta Med J 2012;24:21-24.
2.    Innes A, Abela S, Scerri C. The organisation of dementia care by families in Malta: The experiences of family caregivers. Dementia 2011;10:165-184.
3.    Ettema TP, Dröes RM, de Lange J, Ooms ME, Mellenbergh GJ, Ribbe MW. The concept of quality of life in dementia in the different stages of the disease. Int Psychogeriatr 2005;17:353-370.
4.    Takai M, Takahashi M, Iwamitsu Y, Oishi S, Miyaoka H. Subjective experiences of family caregivers of patients with dementia as predictive factors of quality of life. Psychogeriatrics 2011;11:98-104.
5.    Campbell P, Oyebode J, Job D et al. Determinants of burden in those who care for someone with dementia. Int J Geriatr Psychiatry 2008;23:1078-1085.
6.    Li R, Cooper C, Bradley J, Shulman A, Livingston G. Coping strategies and psychological morbidity in family carers of people with dementia: a systematic review and meta-analysis. J Affect Disord 2012;139:1-11.
7.    Cooper C, Katona C, Orrell M, Livingston G. Coping strategies, anxiety and depression in caregivers of people with Alzheimer’s disease. Int J Geriatr Psychiatry 2008;23:929-936.
8.    Kneebone II, Martin PR. Coping and caregivers of people with dementia. Br J Health Psychol 2003;8:1-17.
9.    Afram B, Stephan A, Verbeek H et al. Reasons for institutionalization of people with dementia: informal caregiver reports from 8 European countries. J Am Med Dir Assoc 2014;15:108-116.
10.    Folstein MF, Folstein SE, McHugh PR. “Mini-Mental State”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189-198.
11.    Collin C, Wade DT, Davies S, Horne V. The Barthel ADL index: a reliability study. Int Disabil Stud 1988;10:61– 63.
12.    Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67:361-370.
13.    World Health Organization. WHOQOL-BREF: introduction, administration, scoring and generic version of the assessment – field trial version. 1996. WHO, Geneva.
14.    Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980;20:649-655.
15.    Carver CS. You want to measure coping but your protocol’s too long: Consider the Brief COPE. Int J Behav Med 1997;4:92-100.
16.    Cooper C, Katona C, Orrell M, Livingston G. Coping strategies and anxiety in caregivers of people with Alzheimer’s disease: The LASER-AD study. J Affect Disord 2006;90:15–20.
17.    World Health Organization. Call for Action by the participants in the First WHO Ministerial Conference on Global Action Against Dementia (Geneva, 16-17 March 2015). http://www.who.int/mental_health/neurology/dementia/call_for_action_en.pdf?ua=1. Accessed 17 May 2018.
18.    Bjelland I, Krokstad S, Mykletun A, Dahl AA, Tell GS, Tambs K. Does a higher educational level protect against anxiety and depression? The HUNT study. Soc Sci Med 2008;66:1334-1345.
19.    Sansoni J, Vellone E, Piras G. Anxiety and depression in community-dwelling, Italian Alzheimer’s disease caregivers. Int J Nurs Pract 2004;10:93-100.
20.    Covinsky K, Newcomer R, Fox P et al. Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. J Gen Intern Med 2003;18:1006-1014.
21.    Bergvall N, Brinck, P, Eek D et al. Relative importance of patient disease indicators on informal care and caregiver burden in Alzheimer’s disease. Int Psychogeriatr 2011;23:73-85.
22.    Marvardi M, Mattioli P, Spazzafumo L et al. The Caregiver Burden Inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study. Aging Clin Exp Res 2005;17:46-53.
23.    Serrano-Aguilar PG, Lopez-Bastida J, Yanes-Lopez V. Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer’s disease. Neuroepidemiology 2006;27:136-142.
24.    Millenaar JK, de Vugt ME, Bakker C et al. The Impact of Young Onset Dementia on Informal Caregivers Compared with Late Onset Dementia: Results from the NeedYD Study. Am J Geriatr Psychiatry 2016;24:467-474.
25.    Kliewer W, Fearnow MD, Miller PA. Coping socialization in middle childhood: tests of maternal and paternal influences. Child Dev 1996;67:2339-2357.
26.    Wang J, Xiao LD, He GP, Ullah S, De Bellis A. Factors contributing to caregiver burden in dementia in a country without formal caregiver support. Aging Ment Health 2014;18:986-996.
27.    Scerri C. Empowering change: a national strategy for dementia in the Maltese Islands. 2015. Parliamentary Secretariat for the Rights of Persons with Disability and Active Ageing, Valletta, Malta.

KNOWLEDGE AND PRACTICES GOVERNING THE IMPLEMENTATION OF NASOGASTRIC TUBE FEEDING AS A TEMPORARY UNDERNUTRITION MANAGEMENT MEASURE IN ACUTE GERIATRIC CARE: A QUALITATIVE RESEARCH-BASED ANALYSIS

 

E. Fercot1, L. Marty2, C. Bouteloup3, Y. Lepley4, J. Bohatier1, M. Bonnefoy4, B. Lesourd5, Y. Boirie6, S. Dadet7

 

1. Gérontopôle, CHU Clermont-Ferrand, Clermont-Ferrand, France;
2. Anthropologue de la santé, Département de Médecine Générale, Université Clermont Ferrand Auvergne, Clermont-Ferrand, France; 3. Université Clermont Auvergne, INRA, UNH,Unité de Nutrition Humaine, CHU Clermont-Ferrand, Service de médecine digestive et hépatobiliaire, CRNH Auvergne, Clermont-Ferrand, France; 4.  Université Claude Bernard Lyon 1, Faculté Lyon-Sud, France, Inserm U1060, Université Lyon 1, France, Service de médecine gériatrique, Hospices civils de Lyon, France; 5. Université Clermont Auvergne, Clermont-Ferrand, France; 6. Université Clermont Auvergne, INRA, UNH, Unité de Nutrition Humaine, CHU Clermont-Ferrand, Service de Nutrition Clinique, CRNH Auvergne, Clermont-Ferrand, France; 7. Université Clermont Auvergne, INRA, UNH, Unité de Nutrition Humaine, CHU Clermont-Ferrand, CHU Clermont-Ferrand, Gérontopôle, CHU Clermont-Ferrand, France.

Corresponding Author: Elise Fercot, Gérontopôle, CHU Clermont-Ferrand, F-63000 Clermont-Ferrand, France, fercote@hotmail.fr

J Aging Res Clin Practice 2018;7:115-122
Published online October 15, 2018, http://dx.doi.org/10.14283/jarcp.2018.20

 


Abstract

Introduction: Nasogastric tube feeding appears underused in acute geriatric care units. The objective of this study was to identify the knowledge, practice, fears or behaviors of care givers governing implementation. Material and Methods: Multicentric qualitative research study based on interviews with geriatricians and care staff. Coding of patterns and thematic analysis of the data were used to extract key concepts tied to the objective. Results: Ten geriatricians and eleven care staff were interviewed individually and in a focus-group setting. Undernutrition was perceived as a prognosis-worsening comorbidity, not a disease. Early screening for undernutrition appeared essential, but care management and monitoring was within the remit of downstream structures. A handful of indications are reported to justify moves to start nasogastric tube feeding, often as part of adjuvant care, when real benefit is expected, when the individualized feeding plan is part of a comprehensive care plan, with the patient consciously involved and after consulting with the family. Patients’ fear of complications, cognitive disorders, and uncertain life expectancy often fuel concerns of a form of unreasonable obstinacy. Finally, doctors and care staff alike think that decisions on nasogastric intubation in this patient population require a multidisciplinary-team process. Conclusion: Nasogastric tube feeding in acute geriatric care remains fraught with issues. It looks a viable option, but should be part of a comprehensive care plan, based on multidisciplinary decision-making by appropriately-trained teams, where the goals of care are the patient’s comfort and quality of life.

Key words: Enteral nutrition, frailty, care management, geriatrics, malnutrition, quality of life.


 

Introduction

According to French health authorities (HAS-Haute Autorité de Santé) figures, the prevalence of hospital undernutrition in France approaches 30–70% in patients over 80 years (1, 2). Acute illnesses increase protein-energy needs, while intakes are often inadequate due to episodic loss of appetite, eating difficulties or malabsorption (1, 3). This deficit can lead to protein-energy undernutrition, which increases the risk of sarcopenia, frailty (4), loss of functional capabilities (5), infectious risk (6), length of stay at hospital (7) impair functional outcomes and recovery (8) and mortality (9, 10). Effective nutritional management is therefore  necessary, and various academic societies have proposed strategies that include artificial nutrition (1, 11, 12). These care decision strategies can be constructed as decision trees, such as that of the French society for clinical nutrition and metabolism (SFNEP), but are rarely adapted to very old patients (13). The HAS and the European society for clinical nutrition and metabolism (ESPEN) issued guidelines in 2006 and 2007 specifically addressing factors unique to geriatric care : patient life expectancy, functional capabilities, frailty, neurocognitive disorders and comorbidities (1, 12). In practice, while nasogastric tube (NGT) feeding for enteral nutrition (EN) may be recommended in acute-phase hospital care, it is a lot more problematic in the acute geriatric care unit (AGCU) (13) and reluctance for a enteral nutrition may exist because of lack of education, knowledge, communication, or team work (14). In an effort to improve nutrition management in these units, an improvement in a deeper understanding of the practices and of the difficulties among the clinicians and care staff teams is expected.
Therefore, the objective of the present study was to identify the knowledge and practices governing the implementation of NGT feeding in AGCU wards. The aim was to survey geriatric care professionals to capture their opinion on nutrition management, evaluate their knowledge of the issue, characterize their expectations and perceptions, and identify the reasons that frustrate or facilitate the process of prescribing NGT placement.

 

Matherials and methods

Description of the study

This multicentric qualitative research study was led in AGCU wards at different Main City Hospitals (MCH) in the Auvergne region, France.

Choice of method

Qualitative research explores complex phenomena, arising from the ‘human factor’ of care delivery, in their natural environment. It attempts to make sense of the participant experiences and interpret the meanings they attribute to them. The process of analysis is approached inductively, in contrast to deductive approaches that systematically verify a pre-determined hypothesis. The method of inquiry used is based on the 32-item COREQ 2007 criteria, spanning 3 domains: research team and reflexivity, study design, and analysis and findings (15). Data was collected through semi-structured interviews-either individual or in focus-group format. Individual interviews give interviewees the freedom to open up and express themselves, while focus groups enable interaction based on group-effect dynamics and dialogue, thus facilitating the emergence of knowledge, opinion and experience by bringing different personal perspectives together. The open-ended questions addressed topics defined in an interview guide. People interviewed were free to address other concepts not initially agendaed. The study secured approval from the local French ethics committee (‘CPP’ Sud-Est VI) for the protection of human subjects.

Sampling

The sample of geriatric doctors and care staff (Registered Nurses (RN) and Registered Nursing Care Assistants (RNCA))-all of whom were volunteers-had to be heterogeneous in order to capture the broadest possible range of opinions, experiences and practices. Age, gender, place of practice, career path, time in the job, and further training and education had to be as varied as possible. We continued to include material until thematic saturation.

Interview guide

Two interview guides were developed and tested to fit each professional (one for doctors and one for care staff, both of which served for the individual interviews and the focus group) in order to explore the various themes exposed in the literature on enteral nutrition. The guides were modified after the early exploratory interviews, as the questions were not open-ended enough, which hinded in free-flowing conversation. Likewise, certain questions asking about the knowledge held by doctors and care staff were deleted to rule out any value judgment.

Process and flow of the interviews

The interviewers opened by explaining the aim of the interview or focus group and the objectives targeted. They then had the time to outline the interview process, guaranteeing that everything shared would be anonymous and confidential and in no way critical or judgemental. The interviewer then collected the credentials of the people interviewed and their consent to record the conversation.
a) Process and flow of a semi-structured individual interview:
The interview started with the interviewee telling their story of an experience-whether good or bad-with NGT feeding. The questions were then cued by the interview guide until all the themes had been addressed. The same interviewer, mainly at the participants’ place of work, conducted all the interviews.
b) Process and flow of a semi-structured focus group:
The focus group was asked to talk over one or more experiences concerning NGT feeding. Two investigators were mobilized to take part in the focus group-one as facilitator, the other as observer to collect expressions of nonverbal communication. The moderator used a set of questions to keep dialogue and discussion focused, making sure that all the focal topics in the interview guide were addressed.

Collection of the data material

All the interviews were recorded end-to-end on an OLYMPUS-brand digital dictaphone. All digital capture was transcribed in depersonalized format into a verbatim-record Microsoft Word document. No digital data records were kept.

Method of analysis

The process of thematic analysis based on verbatim accounts started right from the first interview. The content of the verbalized conversation was collapsed into themes that were then subcategorized. The interview transcripts were then re-read and reviewed a second time using this list.

 

Results

Description of the people interviewed

The interviews were conducted from February to August 2015.

Interviews with doctors

Interviews were led in-hospital, in 5 different MCH including 4 AGCU, on the 10 geriatric doctors reported in Table 1, thus compiling 4h22 of recorded material. The sample was positively heterogeneous for age, gender, experience and place of practice. The focus of background training tended to be on palliative care and neurodegenerative diseases. Only one of the doctors had been university-trained on nutrition.

Table 1 Doctor characteristics

Table 1
Doctor characteristics

 

Interviews with care staff

Interviews were led in the same MCH hosting 3 different AGCU, on the 11 care staff reported in Table 2, thus compiling 4h04 of recorded material. Two participants were interviewed by phone and one at home. The sample was positively heterogeneous for age, gender, and professional experience. The most common focus of background training was palliative care and neurodegenerative diseases, and only two of the 11 care staff had been given training on nutrition.

Table 2 Care staff characteristics

Table 2
Care staff characteristics

RN¹ Registered Nurse, NCA² Nursing Care Assistant

 

Analysis of the main findings

Various major themes and concepts emerged.

Knowledge and training levels of the geriatric care professionals

Interviews with doctors

The geriatric doctors claim they are undertrained on nutrition. “You can’t say ‘trained’. You learn on the job.” (Doctor #5) “By our department heads and colleagues.” (Doctor #6)

Interviews with care staff

The RN feel undertrained on EN, especially on technical procedure. “I think the nurses in general don’t know enough about placing the NGT, because, it’s true, at nursing school you only get a brief look at it” (RN #1) “Er, the training goes back 15 years ago […] but the first one I got to place, that was later on, once I had started work” (RN #2).

Nutrition in hospital practice

Screening for undernutrition

Screening appears to be a routine phase, but with different approaches. “It’s a routine practice on the admission tests for all elderly subjects”. (Doctor #1) “Weight, height, body mass index chemistry panel-systematically” (Doctor #4). The geriatricians also think they are more undernutrition-aware than other speciality practitioners. “We screen them as soon as they come in […] We’re optimal on that, we’re in good shape”(Doctor #1). However, there is variability in the resources mobilized for the nutritional status assessment, and the doctors voiced their issues, given how exhaustive investigation is just not feasible. “It’s always made hard by the fact they already have some kind of inflammatory syndrome, so we struggle to quantify their baseline nutritional status” (Doctor #3) “It only really starts getting useful if you’ve got past weight figures”. (Doctor #3). Close monitoring of food intakes is voiced more by the care staff, who also feel they are screening-aware. “We generally do the 3-day food and drink record chart” (RN #3). “If they don’t eat anything, there are written messages, verbal messages, it gets flagged up.” (RNCA #1).

Management of undernutrition

For the doctors, oral nutrition remains the best care plan going forward. “So if oral intake is possible, then you put them straight on oral nutritional supplements (ONS) already […] you maintain oral feeding, which takes priority” (Doctor #1). “In most cases, elderly patients are undernourished. So what I sometimes do is, rather than wait to get low blood Proteins, I put them straight on refeeding protocol with two ONS/day.” (Doctor #1) Certain hypercatabolic-syndrome settings nevertheless prompt them to start thinking oral nutrition is not enough. “When pressure ulcers or cancers come back, these situations where you know you need far higher intakes-where you have no time to lose.” (Doctor #2)

Follow-up on undernutrition care throughout the hospital stay

Some geriatricians feel that undernutrition management should be pushed back to later. “In the AGCU, you assess: the hospital stay is too short to re-assess your NS-backed feeding programme […]. When you come to re-assess, they are often already be in Subacute Care and Rehabilitation (SCR)” (Doctor #2). However, they do feel that they could also push their engagement further to prepare the ground for enteral feeding when the nutritional management rolls over into SCR “Say, OK, this patient has a severe undernutrition, to be re-assessed in x amount of time and if not reversed, place the NGT.” (Doctor #2). The care staff, though, manifestly voice a disconnect between their routine nursing and the medical management process. “You do food record charts for people who are eating loads, and when you flag up that the person isn’t eating, you don’t do a food record chart […] there’s a gap there, and you tell yourself nothing gets done.” (RNCA #7)

Elements considered for medical decision

Indications for NGT placement

The doctors appear to share a consensus that it is essential to optimally feed patients admitted for pressure ulcer, dysphagia after a stroke, or to ready for surgery or chemotherapy. “After that, deep pressure ulcer might be an issue” (Doctor #3) “a lady who had a haemorrhagic stroke, there it’s undeniably a good indication […] there is hope for recovery once the hematoma resorbs” (Doctor #5) “It’s presurgery nutrition to support better tolerance.” (Doctor #9). Anorexia against a background of depression with decline in general status also emerges as a consensus indication. “We were clearly looking at a care plan including antidepressants, and it worked out that way.” (Doctor #7). There is no clear consensus for infection management, even though the geriatricians appeared to recognize this indication. “I think that one of the best indications is to get through an acute-phase flare of infection or inflammation when you know it is likely to resolve.” (Doctor #3) This was voiced in the focus group without any objection from the co-attendees, and again in individual interview. “It’s in situations of acute stress-where there are going to be difficulties over one week, difficulties getting enough intake during major hypercatabolism-may be situations like that where, from time to time, we could be proposing the patient artificial nutritional support, but we don’t.” (Doctor #10)

Patient information and consent

All the doctors interviewed uphold and respect the principle that the patient’s wishes come ahead of any medical rationale. “Me, I work to the principle that if they are against it, then I don’t fit it” (Doctor #10). Many doctors reported that even when patients are fully informed and give their consent, they will still rip their NGT out eventually. “He ripped the catheter out, we offered to re-place it, and as he answered a very clear ‘no’, we didn’t do it” (Doctor #2) Over and above consent, the decisive factor is ultimately active patient participation. “A patient who was really engaged in cooperation, active collaboration, which makes everything so much easier […] he really was a stakeholder in his own care plan”. (Doctor #5)

Relationship with the family

The family holds a central position as the primary caregivers to go through when communication or decision-making are out of the older patient’s reach, when no advance care directives to go on. “She didn’t want any artificial support, so we held off the enteral nutrition in accordance with the directive that the patient had-supposedly-left but that her two daughters had passed on” (Doctor #5). That said, the opinion of the caregivers can put the practitioner in a difficult position, under pressure from the family to provide an enteral nutrition that the practitioner sees as unreasonable. “The family is always all for it, because their perception is that the nutrition is what is going to save them” (Doctor #10) Conversely, at other times, the family may be against an enteral nutrition that the doctor wants to implement. “We were pretty much pushing-and this was against the family’s wishes-to keep the enteral feeding going, and what ultimately happened was that the patient almost completely recovered as she was able to resumed normal feeding.” (Doctor #5) Even if the family are a primary proxy in geriatrics, the patient remains the primary decision-maker. “He is cognitively healthy, so we don’t need to call the family in-it’s his decision.” (Doctor #1). There is a unanimous view that it is vital to inform the family to foster their acceptance and participation in care. “If you explain everything properly, there’s no reason the family won’t accept it. Information is actually the be-all and end-all.” (Doctor #3)

Care-team decision-making

A collegial forum is something that the doctors and especially the care staff want. “These are still tough decisions to make, so I do find that the staff meeting helps get a clear picture of the issues.” (Doctor #2) Care staff want to be involved in the decision process, to understand it, as their assessments sometimes diverge from those made by the doctors. “Us, the nurses and nursing care assistants, as a rule, it just gets done, no-one asks us for any input. You show up in the morning, NGTs have been placed without anyone asking us if it’s a good idea, a bad idea” (RNCA #6) “When you don’t get consulted, you don’t necessarily understand […] whereas if you’re involved, whether you agree with it or not, at least you can understand.” (RNCA #6)

Benefits expected

The doctors are unable to give a clear picture of the real benefit expected from NGT feeding as a nutrition support measure in this population. “What really clouds the issue is that we just can’t properly measure the impact” (Doctor #5) “My feeling would be that more often than not it’s a failure” (Doctor #3). There appears to be some kind of dichotomy between the confirmed need for a NGT and doubts over the benefit expected. “Is always reasoning in terms of the patient’s best interests, over and above any biological formula or loss of weight, really going to bring them something?” (Doctor #10).

Importance of the care plan

The comprehensive care plan approach is a mainstay of geriatric medicine. “Either way, more than any kind of across-the-board assessment, it’s really going to be typically geriatric, […] What do they want? Is it worth it?” (Doctor #7) The majority of geriatricians was for including nutrition management and NGT feeding into a coherent comprehensive care plan as one of the factors of the parameters of geriatric patient assessment-quality-of-life included. “Geriatrics is never all about a nutrition plan. For me, it’s always about a plan for the future, a plan to make it out of the acute-care period.” (Doctor #7) “What is the plan, what is the potential for recovery?” (Doctor #5).

Prescription practice influenced by geriatric-ward experience

Those practitioners most exposed to care dependency and pathological aging are quick to confide how it may colour their thinking. “Personally I think I have been also conditioned by my experience of long-term hospital care […] a dozen patients on enteral feeding for months, years sometimes, all spent fighting with the adverse effects […] I’ve seen all the negatives of extended enteral, the ethics conversations, the families who just want it all to stop”. (Doctor #5) “Often, with the patients we have here at the AGCU, it’s hard to really go for it when you know the complications” (Doctor #2).

Barriers to implementing EN

Factors connected to the geriatric care environment

Preconceptions and perceptions of geriatricians

The perception seems to be that undernutrition is a comorbidity rather than an independent disease, and the doctors anticipate how patients will react to a problem they often ignore. “The patient’s going to turn round and say ‘but I’ve got no complaint. All I want is to not be in pain, the infection is under control, and right now I don’t feel I’m suffering from undernutrition’ ” (Doctor #5) As a rule, the geriatricians feel that they do start thinking about EN, but often  too late on. “Let’s just say that if you start asking yourself whether you should be putting them on it, then it’s that things are already a bit desperate.” (Doctor #3) This delay may be explained by their doubts over the benefit expected and their overriding concern to put patient quality-of-life first. “I firmly believe that for someone extremely undernourished, trying desperately to refeed them is already a stupid idea-it just won’t work” (Doctor #3). The time factor thus emerges as essential, and for many geriatricians, as soon as the patient is taking even a little food on board, the decision to engage a nutritional intervention can be pushed back to later. “The crux of the issue in AGCU care is that even if you register severe undernutrition, regardless of the criteria you base it on, if food intakes are any good at all, then you can use up time to attempt to recorrect through oral feeding” (Doctor #2).

Preconceptions and perceptions of care staff

The care staff tend to consider that a drop in food intakes is a normal sign of the natural ageing process, culminating in a form of anorexia synonymous with refusal of care: “the person is in her early nineties, you can see that she’s tired of life and that the refusal to eat is her way of showing that she’s had enough” (RN 1). This means that nutrition management decisions-regardless of whether for or against intervention-are often misunderstood, and can sometimes even add a burden of distress to care staff teams who want to be kept informed and their voice heard. “Me, if there’s things I struggle to accept, I go and see the doctors, because if no-one tells me what’s happening, I can’t let it go” (RNCA #11) “sometimes, as care staff, we really struggle when we see someone for weeks, like the guy who died this morning, for weeks he wasn’t eating, and we kept telling them, telling them […] So you get the impression no-one listened to a word we say, nothing gets done about it, that you’re letting them starve to death”. (RNCA #9) That said, even in the situations where the care staff feel disarmed, there is still some ambivalence over the NGT. “I must say, I do find that at it’s still a procedure that is quite violent, in that it’s, after all, still an invasive procedure” (RN #1) The geriatric care teams remain underfamiliarized with using it, and they often experience placing the NGT as an assault on the patient. “I’m still not real comfortable with it, because-well, sure, I haven’t placed many, and as interventions go, it can’t be easy to live with” (RN #4). Today’s better hardware has nevertheless brought tangible progress, which the teams readily accept. “You have these special catheters now, with guidewires, that make procedure so much easier” (RN #2).

Fear of complications

Geriatrics, more than any other ward, seems to suffer the stigma of the incidence of complications. “It’s mainly inhaling stuff, yeah-I had the case of a patient who suffered a major aspiration pneumonia, which he never recovered from”(Doctor #10) “You’re often reluctant to place catheters-you can’t just place catheters and be done, without mulling it over” (Doctor #1).

Difficulties in practice

Interviewees raised several difficulties unique to geriatric care, such as tube feeding at night, the risk of prolonging the hospital stay and difficulties home-front continuation of care, although they also gave some positive feedback. “I’m personally not too happy with them being fed at night because there’s one nurse for 33 patients” (RN #2). “The NGT is not something you can go back home with-not unless you’re on in-home care” (Doctor #4) “I have already had two reports back from a care provider following her at home, and with that, she’s absolutely fine with her NGT” (Doctor #10).

The alternative-parenteral nutrition

Parenteral nutrition (PN) is not perceived as an alternative to NGT feeding, and appears to be rarely used in practice. “Personally I never put a patient on parenteral. Either I decide to talk about the nasogastric tube and then a Percutaneous Endoscopic Gastrostomy (PEG), or it’s a no.” (Doctor #2) Some doctors find that PN may be indicated when the care plan has not be clearly established or when it is difficult to gauge the patient’s acceptance. “Why not use parenteral nutrition more in acute cases when you’re not sure of where you’re going, rather than placing a NGT?”(Doctor #6).

Factors connected to the elderly population

Very old age and unreasonable obstinacy

Many doctors and care staff alike challenge the ethical soundness of starting this type of treatment in very old age, when patients are dependent on care and life expectancy is short, often to the point that it crosses the border into unreasonable obstinacy. “You have to admit that in paediatrics you are thinking about a life ahead, so there’s nothing distressing about putting a feeding tube on a baby in neonatal care because it’s just something you have to do to give them every chance of making it through, whereas in geriatrics you tend to hold back on it, because is NGT really worth it, is the patient consenting?” (Doctor #4) Practitioners regularly struggle with lingering doubts over the outcome of this type of care protocol. “Is it really going to bring the patient some kind of relief, because we’ve all had times when we’ve set up nutrition in patients who deceased shortly after.” (Doctor #10)

Cognitive disorders

The prevalence of cognitive disorders in the geriatric-care population emerges as a real barrier to the use of EN. “They’re just going to rip it out, because they just don’t understand what’s going on.” (Doctor #7) “When you have to fit wrist restraints just to keep the NGT in place, I consider that we’ve lost all sight of common sense and that we’re bordering on abuse to get someone feeding” (Doctor #10). The doctors remain well aware of the risk of under-evaluating the right indications for enteral nutrition. “You get so conditioned by all these patients who are very old or have cognitive disorders […] it prompts behaviours in patients who would likely benefit and we maybe end up overcompensating and excluding them.” (Doctor #5)

The long-term-care perspective

The geriatric doctors appear to fear the withdrawal of the NGT or the risk of having to move to a long-term PEG they feel is unreasonable. “You are withdrawing food, which in people’s minds means you are killing the patient […] Withdrawing it is a really tough call.” (Doctor #6) “Why didn’t we put him on PEG? You have to do something to stop short of overaggressive obstinacy […] there are situations where you have to know when it’s time to stop, because once you take the road of a nutrition management process, after there’s no turning back.” (Doctor #4)

Patient comfort and quality of life

The staff struggle to square integrating an invasive protocol like NGT feeding into a care plan where the goals are supposed to be the patient’s comfort and quality of life. “You feel like you’re creating them unnecessary hassle, given that in 10 days’ time, they’ll be back at home.” (Doctor #5)

 

Discussion

Main findings

The objective of this study was to analyze the knowledge and practices governing implementation of nasogastric tube feeding as an enteral nutrition support measure in AGCU wards. Our findings highlight a number of factors that create a disconnection between real-life bedside care practices and guidelined medical nutrition management. Even though practitioners can lead on HAS and ESPEN guidelines, our study effectively shows that the issue remains fraught with complexity-a complexity that can be translated into several explanatory concepts to help better grasp the difficulties faced by geriatric health care teams.
Foremost, the geriatric health care teams are essentially trained in the management of cognitive disorders and end-of-life care, which revolves around a comprehensive care plan approach focused on the patient’s comfort and quality of life. Our results do show that undernutrition is perceived as a latent phenomenon, commonly emerging in elderly patients, and patterned perhaps more as a comorbidity to be dealt with than a disease to be treated.  The most common care consists in screening and oral nutrition, and geriatricians often think that Subacute Care and Rehabilitation is a better ward for nutrition care than AGCU. NGT feeding does not appear to be considered a solution to improve way to improved protein-energy intakes. It does feature in the therapeutic arsenal of geriatric medicine, but does not appear to get used unless to support adjuvant care for other diseases when framed within a comprehensive care plan (13). It is perceived as an invasive, aggressive therapeutic measure, which increases the risk of confusion, and often leads geriatric care teams to feel they are going against their primary goals of care, i.e. the patient’s comfort and quality of life.
Then, when its use seems needed, several concepts converge to influence medical decision-making in the AGCU ward, and thus determine certain preconditions. Information and consent are vital yet insufficient factors. Active patient participation, which goes further than a straight yes/no consent, is absolutely pivotal and will be dictated by how the NGT intervention plan is presented to the patient, how far the patient can trusts the doctor and how the patient can understand the information. Another concept is the role of the primary caregivers. Even though the medical decision has always been grounded in the wishes of the patient, it appears essential to have their collaborative involvement. The long-term-care perspectives can also prove problematic. Firstly, organizing EN at home for care-dependent patients can prove a real hurdle. Secondly, the uncertainty about the patient’s progress may lead to fear of a form of unreasonable medical care with the risk of becoming forced to look at a PEG. Last but not least, ethical factor remains a key factor being systematically addressed in this population where life expectancy is uncertain and prevalence of cognitive disorders is high. Consequently, the expected benefit of an NGT intervention seems uncertain for care teams and has to be more clear whereas they affraid over crossing the border into unreasonable obstinacy. Thus, the care staff teams-like the doctors-voice their need for a medical decision to be taken by multidisciplinary collegial consensus.
The circumspective position manifested by the geriatricians is probably legitimate given the potential consequences of an NGT in the most frail elderly (16). While the guidelines do not rule out NGT feeding as a very-short-term measure in patients with cognitive impairment, extended long-term delivery of EN via PEG is not advisable (1,12). The ESPEN prompts practitioners to think hard about the expected benefits of EN, and the HAS is equally prudent, advising EN only when expected benefit is considered to outweigh the procedure-related risks (1,12). Furthermore, the legal framework tends to improve comfort-only and support care first (17, 18). Even though the guidelines argue for enteral nutritional support to maintain normal intakes (1,11,12), the literature fails to confirm any real benefit in very old inpatients outside of certain indications for orthopedic surgery or as treatment for pressure ulcers (19-22).  Nutritional interventions studies seems effective but often concern younger patients, and few of them bring evidence that would encourage geriatricians to start a nutritional intervention in the oldest age-bracket patients (23-25). A recent review of the literature confirms the struggle to characterize the groups of elderly inpatients most likely to benefit from nutritional support (26). However, the geriatric care teams appear too undertrained on EN to be able to confidently assess this benefit–risk ratio and they have probably to expand their use of EN. Some of the concepts highlighted should be considered in order to initiate an EN as part of a global care project.
The qualitative approach adopted here enabled us to explore complex phenomena beyond the grasp of other scientific approaches. However, this method of inquiry does impose certain limitations, that we sought to minimize here using COREQ criteria (15).

 

Conclusion

Active nutrition management for undernourished elderly patients in the AGCU is problematic as a process when the goals of the care plan are the patient’s comfort and quality of life. Although various sets of recommendations have been released to help to guide clinicians in their decision-making, there is no solid data to confidently assert the benefit of EN in very-old-age patients and confirm the grounds for its indication. The good use of NGT in AGCU remains to be defined despite the guidelines of ESPEN and HAS.

 

Ethical standards: The study secured approval from a french committee for the protection of human subjects.

Conflict of Interest: The authors have no conflict of interest.

 

References

1.    Haute Autorité de Santé – Stratégie de prise en charge en cas de dénutrition protéino-énergétique chez la personne âgée. has-santé.fr. http://www.has.sante.fr/portail/jcms/fc_1249588/fr/accueil-2012
2.     Potter J, Klipstein K, Reilly JJ, Roberts M. The nutritional status and clinical course of acute admissions to a geriatric unit. Age Ageing. 1995;24(2):131-6.
3.     Patel MD, Martin FC. WHY DON’T ELDERLY HOSPITAL INPATIENTS EAT ADEQUATELY? J Nutr Health Aging. 2008;12(4):227-31.
4.     Bonnefoy M, Berrut G, Lesourd B, Ferry M, Gilbert T, Guérin O, et al. Frailty and nutrition: searching for evidence. J Nutr Health Aging. 2015;19(3):250-7.
5.     Galanos AN, Pieper CF, Cornoni-Huntley JC, Bales CW, Fillenbaum GG. Nutrition and function: is there a relationship between body mass index and the functional capabilities of community-dwelling elderly? J Am Geriatr Soc. 1994;42(4):368-73.
6.     Paillaud E, Herbaud S, Caillet P, Lejonc J-L, Campillo B, Bories P-N. Relations between undernutrition and nosocomial infections in elderly patients. Age Ageing. 2005;34(6):619-25.
7.     Herrmann FR, Safran C, Levkoff SE, Minaker KL. Serum albumin level on admission as a predictor of death, length of stay, and readmission. Arch Intern Med. 1992;152(1):125-30.
8.     Sullivan DH. The role of nutrition in increased morbidity and mortality. Clin Geriatr Med. 1995;11(4):661-74.
9.     Wallace JI, Schwartz RS, LaCroix AZ, Uhlmann RF, Pearlman RA. Involuntary weight loss in older outpatients: incidence and clinical significance. J Am Geriatr Soc. 1995;43(4):329-37.
10.     Payette H, Coulombe C, Boutier V, Gray-Donald K. Weight loss and mortality among free-living frail elders: a prospective study. J Gerontol A Biol Sci Med Sci. 1999;54(9):M440-5.
11.     Bouteloup C, Thibault R. Arbre décisionnel du soin nutritionnel. Nutr Clin Metabol 2014;28(1):52-6.
12.     Volkert D, Berner YN, Berry E, Cederholm T, Coti Bertrand P, Milne A, et al. ESPEN Guidelines on Enteral Nutrition: Geriatrics. Clin Nutr 2006; 25(2): 330-60.
13.     Bruhat A, Bos C, Sibony-Prat J, Bojic N. L’assistance nutritionnelle chez les malades âgés dénutris. Presse Med. 2000 ;29(39) :2191-201.
14.     Jaafar MH, Mahadeva S, Subramanian P, Tan MP. Perceptions of Healthcare Professionals on the Usage of Percutaneous Endoscopic Gastrostomy in a Teaching Hospital from a Middle-Income South East Asian Country. J Nutr Health Aging. 2017;21(4):473-479.
15.     Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349.
16.     Lubart E, Leibovitz A, Dror Y, Katz E, Segal R. Mortality after nasogastric tube feeding initiation in long-term care elderly with oropharyngeal dysphagia–the contribution of refeeding syndrome. Gerontology. Karger Publishers; 2009;55(4):393-7.
17.     Loi N. Loi: 303 du 4 mars 2002 relative aux droits des malades… – Google Scholar. Journal officiel; 2002. 1 p.
18.     Aubry R, Puybasset L, Devalois B, Morel V, Viallard M-L. Loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie : analyse et commentaires. Médecine Palliative : Soins de Support – Accompagnement – Éthique. 2016;15(3):165-70.
19.     Bastow MD, Rawlings J, Allison SP. Benefits of supplementary tube feeding after fractured neck of femur: a randomised controlled trial. Br Med J 1983;287(6405):1589-92.
20.     Beattie AH, Prach AT, Baxter JP, Pennington CR. A randomised controlled trial evaluating the use of enteral nutritional supplements postoperatively in malnourished surgical patients. Gut. 2000;46(6):813-8.
21.     Hartgrink HH, Wille J, König P, Hermans J, Breslau PJ. Pressure sores and tube feeding in patients with a fracture of the hip: a randomized clinical trial. Clin Nutr. 1998;17(6):287-92.
22.     Stratton RJ, Ek A-C, Engfer M, Moore Z, Rigby P, Wolfe R, et al. Enteral nutritional support in prevention and treatment of pressure ulcers: a systematic review and meta-analysis. Ageing Res Rev. 2005;4(3):422-50.
23.     Milne AC, Avenell A, Potter J. Meta-analysis: protein and energy supplementation in older people. Ann Intern Med. 2006;144(1):37–48.
24.     Feldblum I, German L, Castel H, Harman-Boehm I, Shahar DR. Individualized nutritional intervention during and after hospitalization: the nutrition intervention study clinical trial. J Am Geriatr Soc. 2011;59(1):10-7.
25.     Hegerová P, Dědková Z, Sobotka L. Early nutritional support and physiotherapy improved long-term self-sufficiency in acutely ill older patients. Nutrition. 2015;31(1):166-70.
26.     de van der Schueren MAE, Wijnhoven HAH, Kruizenga HM, Visser M. A critical appraisal of nutritional intervention studies in malnourished, community dwelling older persons. Clin Nutr. 2016;35(5):1008-14.

CAN CONTINUOUS, INTER-GENERATIONAL COOPERATION POSITIVELY IMPACT? FINAL RESULT

 

 

R. Rokkaku1, A. Homma2, S. Kobayashi1, Y. Seki1

 

1. Tokyo University of Technology, Tokyo, Japan; 2. Dementia care research and training center of Tokyo, Japan

Corresponding Author: Ryoko Rokkaku, Ph.D., R.N. School of of Nursing, Dokkyo Medical  University, Kitakobayashi Mibu-Machi, Shimotsuga-Gun Tochigi, Japan, rrokkaku@dokkyomed.ac.jp, Tel +81 282-86-1111(5188)

J Aging Res Clin Practice 2016;5(3):128-131
Published online June 23, 2016, http://dx.doi.org/10.14283/jarcp.2016.102

 


Abstract

An aim of the present study is to examine the impact of inter-generational cooperation on the quality of life of elderly Alzheimer’s sufferers. The study is a continuing, two-year intervention report. The subject consist of an intervention and a control groups of six and five sufferers, respectively, who were diagnosed with Alzheimer’s disease. Both groups attend day care services. The intervention group participates in the inter-generational program with children, while the control group does not. In the results, the score of Quality of Life – Alzheimer’s disease (QOL-AD ) of the subjects has been significantly higher in the intervention group comparing with that of the control group. been significantly higher in the intervention group comparing with that of the control group. Also the Philadelphia Geriatric Center Affect Rating Scale(PGC-ARS), have been significantly higher in the intervention group those in the control group., The magnitude of the change was not so remarkable as to influence QOL-AD at home. The present intergenerational cooperation may improve the quality of life of moderate to severe Alzheimer’s sufferers.

Key words: Inter-generational cooperation, Alzheimer’s sufferers, children, quality of life.


 

Introduction

In Japan over recent years, a rising number of nuclear family households means fewer children live with elderly relatives. Between 1975 and 2010, the ratio of three-generation households, those with a head-of-household 65 years or older, relative to all other types of households, has steadily fallen from 11.8 to 6.9% (1).Therefore, interaction between children and senior citizens has been decreasing. Moreover, it seems that socio-economic conditions have changed in Japan, requiring young adults to relocate for work. This creates various problems that the elderly generation traditionally provides, such as emotional support, mentoring, babysitting services, and the teaching of customs to the youth generation.
Although a few results have been reported on the intergenerational program between the elderly persons and children, no results have been reported on the inter-generational cooperation between elderly persons with Alzheimer’s disease and children. An aim of the present study is to clarify the effect of an inter-generational program for Alzheimer’s sufferers through the cooperation with children. This is a final report of the results, two-year intervention from June 2012 to June 2014.

 

Subjects

The subjects of the study consist of the intervention group of eight Alzheimer’s sufferers and six Alzheimer’s sufferers for the control group, all of whom have been diagnosed with dementia of the Alzheimer’s type, based on the diagnostic criteria of DSM-IV-TR (2). Informed consent to participate in the study was obtained from the participants themselves, their carers, and the parents of the children.  The intervention group attends day care services at one site in city A and participates in an inter-generational program with children. The control group attends services at another site, also in city A, and is not given the opportunity to interact with children. Both sites are operated by the same organization and the care staff of the both sites rotates at regular intervals to minimize the difference of care. Also, the condition of formal care services is strictly defined by the Long-Term Care Insurance Law in Japan.

 

Methods

The program consists of activities held every morning from 10 to 11:30, with such traditional crafts as making paper fans, carp streamers, rice cakes, toys, and dolls, singing traditional songs, and playing traditional games. All activities are planned one month in advance with the requirements that they are fun, easy-to-do, continuous and varied. The care staff are all nationally licensed nurses, care workers, care helpers, or nursery school teachers.
Assessment are made every six months using the following scales: FAST (Functional Assessment Staging) (3) to measure severity of dementia, HDS-R (Hasegawa’s Dementia Scale, revised) (4) which is similar to MMSE and the most common simple psychometric scale in Japan, DAD (Disability Assessment for Dementia) (5)  to measure ADL (activities of daily living), Behave-AD (Behavioral Pathology in Alzheimer’s Disease) (6) to measure behavioral complications, PGC-ARS (Philadelphia Geriatric Center-Affect Rating Scale) (7) to measure the status of the mood, and QOL-AD (Quality of Life in Alzheimer’s Disease) (8) to measure quality of life. A nurse administered HDS-R and evaluated FAST, DAD, Behave-AD, and QOL-AD based on the information of family carers. Also, the same nurse assessed PGC-ARS from the facial expressions and behaviors of the subjects.
In the analysis, the total scores of six scales were analyzed by analysis of variance between the groups. The main effects between the groups, interacting effects by time and the group and the items of DAD, Behave-AD, PGC-ARS and QOL-AD were also analyzed.
Regarding ethical considerations, the IRB of the Tokyo University of Technology approved the protocol of the study.

 

Results

Eight subjects of the intervened group and six subjects of the control group were assessed after 12 months and 24 months. The demographics of the subjects, including mean age, severity of dementia, FAST, HDS-R scores, Behave-AD,  DAD, QOL-AD(Family), at the baseline and 12 months and 24 months of the intervened group and the control group are shown in Table 1. No significant differences were found at the baseline between the intervention and the control groups. In the results of analysis of variance, no significant main effects of the group were found in the scores of FAST, HDS-R, DAD, Behave-AD and QOL-AD(Family) between the two groups.
As to QOL-AD(sufferer), we find that the Intervention-sufferers’ levels have remained basically stable. Control-sufferers QOL-level, however, has fallen slightly.Household results did not result in any significant differences.

 

Table 1 Mean age and the scores of FAST, HDS-R, Behave-AD, DAD and QOL-AD at the baseline and 12 months and 24 months in the intervention and the control groups

Table 1
Mean age and the scores of FAST, HDS-R, Behave-AD, DAD and QOL-AD at the baseline and 12 months and 24 months in the intervention and the control groups

 

QOL-AD(Patient)

As to PGC-ARS, six items of the scale were separately analyzed. Although no significant main effect of the group were not found in the six items, significant interactive effects by the group and time were obtained in the items of pleasure(F (1, 13) =9.180 (p<0.01)), interest(F (1, 13) =8.630 (p<0.01)) (Table 2, Fig. 1, Fig. 2).

 

 

Figure 1 QOL-AD Sufferers’ QOL

Figure 1
QOL-AD Sufferers’ QOL

**>.01

 

Table 2 Philadelphia Geriatric Center-Affect Rating Scale: The scores of the baseline and 12 months and 24 months in the intervened group and the control group

Table 2
Philadelphia Geriatric Center-Affect Rating Scale: The scores of the baseline and 12 months and 24 months
in the intervened group and the control group

 

(1) pleasure,for example smiling, laughing, friendly touching, nodding one’s head, etc., remained quite stable over the past year for the Intervention Group, while those in the Control Group demonstrated a drop in such behaviors.
and (2) interest, which is identified by such signs as following a moving object with the eyes, concentrated visual focus on a person or object, stable eye contact, and physical or oral reaction to stories or music.
In the Control Group, baseline levels for Pleasure and Interest are both 4.83.  However, after 12 months, the levels fell to 2.67 and 3.50 and rose again to 3.20 and 4.00, respectively.  On the other hand, in the Intervention group, Pleasure levels at the baseline, after 12 months, and after 24 months changed from 4.55 to 4.50 then rose to 5.00, respectively. In terms of Interest, the levels consistently rose from 4.73 to 4.75 to 5.00.
In other words, the Intervention group had statistically significant increases in Pleasure and Interest over the Control group.
In addition, Moreover, the elderly have shown changes in their interactions, related to the children.
– They smile more.
– They display affection, such as hugging, holding hands, and stroking the heads of the children.
– They have started taking care of the children,  for example grooming or cleaning them.
Surprisingly,
– They call the children by name.and
– In conversations among the elderly sufferers, they discuss the children much more.

 

 

Figure 2 Philadelphia Geriatric Center Affect Rating Scale: Pleasure

Figure 2
Philadelphia Geriatric Center Affect Rating Scale: Pleasure

 

**>.01

 

Figure 3 Philadelphia Geriatric Center Affect Rating Scale: Interest (average score)

Figure 3
Philadelphia Geriatric Center Affect Rating Scale: Interest (average score)

**>.01

 

Discussion

In the final results, and of the three evaluation scales used,
First, on the QOL-AD(Sfferes) scale, Intervention sufferers reported stable conditions, while the Control sufferers reported decreases.Second, on the Philadelphia Geriatric Center Affect Rating Scale, two items were statistically significant: Pleasure and Interest increased with inter-generational cooperation. Contact with children seems to positively affect the AD sufferers through mental stimulation.
In the results, no differences were obtained in HDS-R, DAD, Behave-AD and QOL-AD(Family) between the groups. DAD, Behave-AD and QOL-AD(Family)  were evaluated based on the information from carers. So this means the program had no psychosocial effects at home for the both groups regardless of number of uses of day services. However, significant interactive effects were obtained in the items of Pleasure, Interest of PGC-ARS. This implies that the positive affect of the intervened group has been maintained rather than the control group while attending the sessions in the day care service. This may reduce the burden on the staff caring for Alzheimer’s sufferers in the day care services.
The present results have three major limitations. The first one is the small number of subjects. five and eight subjects dropped out in the intervention and the control groups, respectively, during the twenty-four months. This complicates conclusions. If the subjects are limited to those with very early stage of Alzheimer’s disease, the number of subjects who dropped out would fall. However, it is difficult to access the subjects with very early Alzheimer’s disease under Japan’s long-term care insurance. The second limitation is that the method of the study is not a randomized controlled study. However, it is not possible to assign the subjects randomly since the inter-generational cooperation in the present study is a group program, not individual cooperation. The third limitation is that the effects to the staff, the children, and their parents are not quantitatively measured, while enlightening and educational effects to the parents of the children are apparent.

 

Conclusion

First, on the QOL-AD(Sfferes) scale, Intervention sufferers reported stable conditions, while the Control sufferers reported decreases .Second, on the Philadelphia Geriatric Center Affect Rating Scale, two items were statistically significant: Pleasure and Interest increased with inter-generational cooperation. Contact with children seems to positively affect the AD sufferers through mental stimulation. Also, it might be useful to educate the parents of the children, whose understanding of dementia was poor.

Acknowledgements: This study has been fully funded by the Japanese Ministry of Education, Culture, Sports, Science and Technology. The authors thank the Alzheimer’s sufferers, children and their parents participating in this study.

 

References

1.    National Institute of Population and Social Security Research. Vital Statistics of Japan, 2013. Available at: http://www.ipss.go.jp/syoushika/tohkei/Popular/Popular2013.asp?chap=0. Cited 6 January 2014.
2.     American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4th ed. text revised. Washington D.C.: APA; 2000.
3.     Sclan SG, Reisberg B. Functional Assessment Staging (FAST) in Alzheimer’s disease: reliability, validity, and ordinality. International Psychogeriatrics.1992; 4 (03):55-69.
4.     Katou S. Revising the Hasegawa simple intelligence evaluation scale (HDS-R). Japanese Journal of Geriatric Psychiatry. 1991; 2:1339-1347.
5.     Gelinas I, Gauthier L, McIntyre M. Development of a functional measure for persons with Alzheimer’s disease. The disability assessment for dementia. American Journal of Occupational Therapy. 1999; 53:471-481.
6.     Reisberg B, Auer SR, Monteiro IM. Behavioral pathology in Alzheimer’s disease (BEHAVE-AD) rating scale. International Psychogeriatrics. 1997; 8:301-308.
7.     Lawton PM. Quality of life in Alzheimer’s disease. Alzheimer Disease Association Disorders. 1994; 8(3):138-150.
8.     Revell AJ. Quality of life in the Alzheimer’s disease (QoL-AD) scale: factor solutions in non-demented elders. University Park: Pennsylvania State University; 2002. p.5. Available at: http://www.uwpsychiatry.org/sls/QOL_AD_2002.pdf. Cited January 7, 2014.
9.     Phung KTT, Waldorff FB, Buss DV, et al. A three-year follow-up on the efficacy of psychosocial interventions for patients with mild dementia and their caregivers: the multicentre, rater-blinded, randomized Danish Alzheimer Intervention Study (DAISY). BMJ Open 2013;3:e003584. doi:10.1136/bmjopen-2013-003584.
10.     Carrion C, Aymerich M, Bailles E, Lopes-Bermejo A. Cognitive Psychosocial Intervention in Dementia: a Systematic Review. Dementia and Geriatric Cognitive Disorders. 2013; 36: 363-375.
Products/3235.0~2012~Main+Features~Main+Features?OpenDocument. Accessed 9 August 2014

AGING AND THERAPEUTIC DELAY IN COLORECTAL CANCER: A FRENCH POPULATION-BASED STUDY

 

C. Montuclard1, V. Jooste1, V. Quipourt2, S. Marilier2, J. Faivre1, C. Lepage1, A.M. Bouvier1

 

1. Registre Bourguignon des Cancers Digestifs, Inserm U866 and CIC-EC, Dijon ; Université de Bourgogne; CHU Dijon; 2.  Unité de Coordination en Oncogériatrie en Bourgogne (UCOGB), Hôpital de jour gériatrique, Centre de Champmaillot, CHU Dijon.

Corresponding Author: Anne-Marie Bouvier, Registre Bourguignon des Cancers Digestifs [INSERM U866], Faculté de Médecine, BP 87 900 21079 Dijon Cedex, France. Tel : (+33) 3 80 39 33 40  Fax : (+33) 3 80 66 82 51, E-mail : anne-marie.bouvier@u-bourgogne.fr

 


Abstract

Background/Objectives: Data on the time between colorectal cancer diagnosis and treatment in real-life practice for elderly patients are scarce. We measured times from diagnosis to first-course therapy in elderly patients with colon and rectal cancers. Design: The study was carried out on the population-based Burgundy Digestive Cancer Registry (France). Setting: Therapeutic delays were described by medians and interquartile ranges and compared by the Kruskal-Wallis rank test. Factors associated with changes in therapeutic delay were identified using a multivariate Cox model. Participants: The analysis was carried out on 2,884 patients aged 60 years and over with colorectal adenocarcinoma diagnosed between 2005 and 2011. Measurements and Results: The median therapeutic delay for colon cancer was 25 days in patients aged 60 to 69 years and 24 days for those aged 70-79 years. The delay fell significantly to 19 days in patients aged 80 and over (p<0.001). The median therapeutic delay for rectal cancer did not vary according to age group (respectively 39, 38 and 33 days). For colon cancer, a Charlson comorbidity score=0, in all age groups, and private care for patients under 80 years, significantly shortened the therapeutic delay. It was significantly longer during the period [2008-2011] only in patients under 80 (HR: 0.89 [0.81 – 0.99] p=0.037). For rectal cancer, only advanced stage (HR advanced vs II: 1.39 [1.04-1.86], p=0.025) shortened the therapeutic delay in patients under 80, while private care shortened therapeutic delay only in patients over 80 (HR private vs public: 1.66 [1.00-2.74], p=0.049). Conclusion: This study highlights that differences in therapeutic delay for the elderly increased over time for colon and rectal cancer. The therapeutic delay did not differ much between the 60-69 and the 70-79 years age groups, whereas it was shorter for patients aged 80 and over.

Key words: Colorectal cancer, elderly, quality of life, registry, adjuvant treatments.

Abbreviations:  HR: hazard ratio, CI: confidence interval.


 

Introduction

In France, colorectal cancer is the third most common cancer with an annual incidence of 40,000 (1) new cases. The ageing of the population and the rise in life expectancy, as well as the increasing incidence of colorectal cancer, will lead to a growing number of affected patients. Social inequalities in healthcare have been identified in every industrialized country whatever the amount of money the government spends on the organization of the health system. In the second and third ‘Cancer Plans’ launched in France, the French authorities established as a national priority the reduction of inequalities with regard to the management of cancers. Reasons for disparities in the management of cancer are multiple and complex. The age of patients is an established factor associated with disparities in the management of colorectal cancer (2). A number of mechanisms lie at the root of these disparities and can intervene at every step of the management, from the pre-diagnostic to the post-therapeutic phase. One of the factors that may determine the care of patients and the prognosis of the disease is the therapeutic delay. Recommendations concerning the therapeutic delay are scarce in Europe. Only the United Kingdom and Denmark produced guidelines recommending a limited delay between diagnosis and treatment. The precise measurement of the disparities that can exist between various groups of patients concerning the therapeutic delay requires data representative of the general population. In this context, cancer registries are a source of extremely useful data. The aim of this study was to describe the therapeutic delay in patients with colorectal cancer according to their age, and to identify epidemiological characteristics associated with disparities in this delay using a population-based digestive cancer registry.

 

Materials and methods

Study population

A population-based cancer registry records all digestive cancers in two French administrative areas in Burgundy: Côte-d’Or and Saone-et-Loire (1,064,000 inhabitants according to the 2011 census). Information is regularly obtained from pathologists in public and private practice, public hospitals (university hospitals including the cancer center and general hospitals), and private physicians: gastroenterologists, surgeons, oncologists, radiotherapists, general practitioners, hospital administrative databases, and the National Health System database and death certificates. No case is recorded through death certificates alone, but these are used as an identification source. Because of the multiplicity of medical and administrative information sources, it was assumed that nearly all newly diagnosed cancers had been registered. The quality of the data collection is evaluated every 4 years by the Institut National de la Santé et de la Recherche Médicale (INSERM), the Institut de Veille Sanitaire (InVS) and the Institut National du Cancer (INCa).Cancers were classified according to the International Classification of Diseases, 10th revision (3). Therapeutic delay was defined as the time between date of diagnosis and first oncologic treatment performed (surgery, radiotherapy or chemotherapy).
Overall 3,679 invasive colorectal adenocarcinomas were registered between 2005 and 2011 in patients aged 60 years and over. In case of two synchronous colorectal cancers, the shortest therapeutic delay was taken into account for the analyses. To avoid including patients with an irrelevant therapeutic delay, we excluded patients with synchronous non-colorectal cancer, patients who underwent emergency surgery (obstruction or perforation), patients treated by endoscopic resection during the diagnostic colonoscopy, patients with fortuitous diagnosis during a surgery for another reason, and patients not treated. A total of 774 patients were excluded. The therapeutic delay was unknown for 21 patients. Finally, 2,884 patients were included (79% cases with colon cancer and 21% with rectal cancer).

Data collection

The Digestive cancer registry contains key information routinely collected regarding patients’ characteristics (sex, age, place of residence, comorbidities, health care facilities), the tumor (stage at diagnosis), and treatment (date and nature of treatment including surgery, chemotherapy and radiotherapy). Patients were divided into three age groups: age 60 to 69, 70 to 79 and 80 and above. The period of diagnosis was divided into two groups, [2005-2007] and [2008-2011]. Cancer stage at the time of diagnosis was classified according to the TNM classification (4). Advanced cancer was defined by cancer stage IV and non-metastatic/ non-resected cancer. The place of residence was categorized according to the classification established by the French National Statistics and Economic Studies Institute (INSEE) into urban and rural areas. The date of diagnosis was generally defined by the date of the colonoscopy. When a colonoscopy had not been performed before treatment, the date of diagnosis was the date of the first positive imaging (CT-scan or barium enema). Comorbidities at the time of diagnosis were listed using the Charlson index (5). Individuals were then assigned to a group according to their index: 0, 1 or >1. The healthcare delivery pattern was classified into public hospitals (including university hospitals, general hospitals and cancer therapy centers), private hospital and mixed places of treatment (receiving care in both public and private hospitals).

Statistical analysis

The characteristics of the cohort were described using percentages. The therapeutic delay was calculated in days and was described by medians and inter quartile intervals (IQI). Medians were compared between different groups by Kruskal-Wallis tests in univariate analysis. Multivariate Cox proportional hazards models were used separately for colon and rectal cancer cases in order to determine what factors were associated with a greater probability of quick access to treatment. As radiotherapy or chemotherapy were very rare as first treatment for colon cancer, this variable was only analyzed for rectal cancer.


Results

Table 1 shows the descriptive data for the whole population according to cancer location. The distributions of the main variables did not differ by age group between colon and rectal location. For both colon and rectal cancers, there was a greater proportion of women in patients over 80 than in younger patients. In patients over 80 with colon cancer, the proportion of patients managed in public facilities was higher than the proportion of patients managed in private facilities (53% vs. 34%) whereas patients under 80 were more often managed in private facilities. Colon cancer was diagnosed in a context of sub-occlusion for 5% and 6% of patients aged 60 to 69 and 70-79, respectively, and for 9% of those over 80.
For rectal cancer, the proportion of patients receiving chemo or radiotherapy at first treatment was lower in the oldest age group than in the youngest (54% vs. 69%). Overall, 45% of patients aged over 80 had a Charlson score=0. This proportion for the 60-69 year-olds was 59% for colon cancer and 72% for rectal cancer.

 

Table 1 Characteristics of the population according to location of the cancer

Unknown: *45 cases, ** 9 cases.  CT: chemotherapy, RT: radiotherapy, # Including patients with visceral metastasis and non-resected tumours without evidence of visceral metastasis

 

The median delays between diagnosis and treatment and their variations according to age groups and patients’ characteristics for colon and rectal cancers were assessed. The median therapeutic delay was 25 days 95%CI [13-41] for the whole population. Delays were shorter for colon cancer (22 days 95%CI [12-36]) than for rectal cancer (37 days 95%CI [24-55]).

Colon cancer

The overall median therapeutic delay for colon cancer was 25 days 95%CI [14-39] in patients aged 60 to 69 years and 24 days 95%CI [13-39] for those aged 70-79 years.  It decreased to 19 days 95%CI [8-32] in patients aged 80 and over (p<0.001). Therapeutic delays were significantly shorter in patients over 80 years compared with those aged less than 79 years for all studied variables except for patients managed in public and private facilities (Table 2). Neither sex nor place of residence was significantly associated with shorter access to treatment in the multivariate Cox analysis (Table 3). A Charlson comorbidity score of zero was significantly associated with a shorter therapeutic delay in patients in all age groups. Care in a private facility was associated with a shorter therapeutic delay only in patients under 80 (HR: 1.16, [1.03-1.31], p=0.017). The delay was significantly longer during the most recent time period only in patients under 80 (HR: 0.89, [0.81-0.99], p=0.037) and for stage I for patients in all age groups.

 

Table 2 Therapeutic delay (days) for colon cancer by age group

IQ: inter quartile interval,  # Including patients with visceral metastasis and non-resected tumours without evidence of visceral metastasis

 

Table 3 Factors associated with quicker access to treatment after diagnosis of colon cancer according to age (Cox proportional hazards model)

HR>1means quicker access to treatment, # Including patients with visceral metastasis and non-resected tumours without evidence of visceral metastasis

 

Rectal cancer

The overall median therapeutic delay for rectal cancer did not significantly vary by age group. It was 39 days [20-56] in patients aged 60 to 69 years, 38 days [23-56] for those aged 70-79 years and 33 days [20-55] for those aged ≥80 years. Therapeutic delays were significantly shorter in patients over 80 years than in younger patients for patients with an advanced stage cancer, those living in rural areas, those managed in private health care facilities and those with surgery as the first treatment (Table 4). After adjustment for all concerned variables, place of residence and first surgical treatment were no longer associated with a shorter therapeutic delay for all patients. Private facilities (HR private vs public: 1.66 [1.00-2.74], p=0.049) were significantly associated with a shorter therapeutic delay for patients over 80 years (Table 5).

 

Table 4 Therapeutic delay (days) for rectal cancer by age group

IQ: inter quartile interval,  CT: chemotherapy, RT: radiotherapy, #Including patients with visceral metastasis and non-resected tumours without evidence of visceral metastasis

 

Table 5 Factors associated with quicker access to treatment after diagnosis of rectal cancer according to age (Cox proportional hazards model)

CT: chemotherapy, RT: radiotherapy , #Including patients with visceral metastasis and non-resected tumours without evidence of visceral metastasis. HR>1means quicker access to treatment


Discussion

Our study examines real-life disparities in care related to delay between diagnosis and treatment in the elderly with colon and rectal cancers. The strength of this study is that it relies on a large population-based sample, allowing separate analyses for colon and rectal cancers. The therapeutic delay did not differ much between the 60-69 and the 70-79 years age groups, whereas it was shorter for patients aged 80 and over. The therapeutic delay increased with time period for patients younger than 80 years old with colon cancer whereas it did not vary for the oldest patients and for patients with rectal cancer. For colon cancer, sub-occlusion at diagnosis was almost twice as common in the oldest age group than in the youngest, which may partly explain the shorter therapeutic delay for the oldest patients. Patients managed in private facilities and presenting with advanced tumors were more likely to have a short therapeutic delay, and comorbidities did not strongly interact with this delay.
Colorectal cancer is frequently encountered in the elderly: 60 to 70% of cases occur in subjects aged 65 or older, and around 45% in those over the age of 75 (6). The improvement in life expectancy plus the increased size of the elderly population have led to a growing number of patients with the disease. Therefore, the care of elderly patients with colorectal cancer is a challenge. Measuring the inequality of treatment in patients with carcinoma is a major concern for the French health authorities, as underlined by successive Cancer Plans established in France since 2003. Disparities in the management of cancer in the elderly are multiple and complex; they can concern patients’ geographical, social or economic environment, and specific approaches are needed to reduce them. No association has been clearly established between therapeutic delay and all-cause death in colon and rectal cancer (7). This meta-analysis by Ramos et al. failed to demonstrate any association between therapeutic delay and the colorectal cancer stage. Data from the SEER program suggested that the shortest delay (<1 week) was associated with a higher risk of all-cause death than was the case with longer delays in colon cancer, whereas it had no impact on colon and rectal cancer-specific death (8). Nevertheless, in addition to the evident psychosocial stress for patients awaiting treatment, therapeutic delay among elderly patients may be a valuable indicator of health care quality.
Unlike other countries, France has the theoretical advantage of a relatively homogeneous population, all of whom have the same national health insurance access to care throughout their lives. Nevertheless, the waiting time from diagnosis to treatment may vary among the elderly. The precise measurement of the disparities that can exist between various groups of patients concerning these delays requires the recording of representative data of the general population. Due to unavoidable selection bias, hospital-based data cannot be considered representative. Population-based registries allow the collection of exhaustive data from all sectors of care in well-defined geographical areas.
There are few studies concerning the therapeutic delay for colorectal cancer in the general population. In our study, the median therapeutic delay was 22 days for colon cancer and 37 days for rectal cancer. A Canadian population-based study showed shorter median therapeutic delays: 12 days for the treatment of colorectal cancer in 2005 (9). In a recent population-based study in the USA, median treatment delays were 13 days for colon and 16 days for rectal cancer8. Other studies demonstrated longer treatment delays for rectal than for colon cancer. However, it is difficult to compare estimates of delay across studies due to differing definitions of delay (10). No previous study has been specifically dedicated to elderly patients and guidelines for maximum acceptable delays are still vague. For example, United Kingdom guidelines state that patients with cancer should have treatment initiated within 2 months of referral by general practitioners (11-13). In Denmark, the recommended maximum interval between referral and the work-up for colorectal cancer is 14 days, with the beginning of treatment within an additional 14 days (14). In France, there are no recommendations concerning therapeutic delays. Our study emphasizes that patterns of care concerning therapeutic delay did not much differ for patients less than 80 whereas it was shorter for those over 80 years of age. The reasons for this variability are numerous and the difference can be partly explained by different baseline characteristics of elderly patients and by changes in access or the physicians’ treatment decisions. The reason for the increase in delays over time for patients less than 80 years is unclear as it concerned only colon cancer.
The increase may be partly related to longer access to the preoperative work-up or to a more complete assessment over time. Delays are likely to continue increasing given the continuing growth of the elderly population and the increasing use of complex, multimodal treatments (15). Neoadjuvant treatments are used for rectal cancer and require medical oncology referrals (radiation oncologists, surgeons and chemotherapists), which could lengthen the delay to the first treatment. As previously published, patients with early TNM stage I cancer had longer therapeutic delays than patients with more advanced cancers15. The reasons remain unclear.  
Elderly patients managed in private facilities showed shorter therapeutic delays. In France, cancers are managed by a highly decentralized health care system, with many treatment facilities and many participants. The supply of care is heterogeneous and certain management disparities may be associated with the organization of the health care system or with the individual characteristics of the patients.
A recent publication has showed that the concordance between the therapies proposed during the tumor board or after the geriatric oncology consultation and the treatment actually given was satisfactory. Currently, the geriatric oncology consultation is performed quickly and does not influence the therapeutic delay (16) .
The main limit of this study is obviously its retrospective observational status, which prevented us from including relevant data, particularly on patients’ socioeconomic level. It would have been interesting to measure how deprivation may have influenced cancer management at the population level. Information on nutrition status would also have been interesting; malnutrition is frequent and may be associated with longer hospital stays, worse outcome, impaired quality of life and performance status (17). The relatively low number of rectal cancer cases may also have led us to miss or under or overestimate some statistically relevant items.
In conclusion, this study highlights that therapeutic delays are shorter for patients over 80 years than for younger patients. Factors affecting this delay are scarce but similar in both age groups. If the range of days of therapeutic delay is not widely extended, the effect of variations in delays on patients’ outcomes, such as recurrences or death, should nevertheless be explored in future research.

 

Conflict of interest: None

Ethical standards: The project comply with the current laws of the country.

Sponsor’s Role: The sponsors of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report.

Disclaimer: None of the authors has any conflicts of interest to declare regarding this study.

Funding sources: French Institut national du cancer (INCa), Conseil Régional.

 

References

1.    Binser-Foucard F, Belot A, Delafosse P, Remontet L, Woronoff A, Bossad N. Francim, Inserm, Institut National du Cancer. 2013.
2.    Desgrippes R, Bouvier V, Delafosse P, et al. Management of rectal cancer in France in a well-defined population. Eur J Gastroen Hepat 2014;26: 743-747.
3.    World Health Organisation. International Classification of Diseases (ICD). 1992.
4.    Sobin L, Gospodarowicz M, Wittekind C. TNM Classification of Malignant Tumours (ed 7).  Wiley, 2009, pp. 19-20.
5.    Charlson ME, Pompei P, Ales KL, MacKenzie CR. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. Journal of chronic diseases 1987;40: 373-383.
6.    Bouvier AM, Remontet L, Jougla E, et al. Incidence of digestive cancers in France. Gastroenterol Clin Biol 2004;28: 877-881.
7.    Ramos M, Esteva M, Cabeza E, Llobera J, Ruiz A. Lack of association between diagnostic and therapeutic delay and stage of colorectal cancer. Eur J Cancer 2008;44: 510-521.
8.    Pruitt SL, Harzke AJ, Davidson NO, Schootman M. Do diagnostic and treatment delays for colorectal cancer increase risk of death? Cancer causes & control : CCC 2013;24: 961-977.
9.    Singh H, De Coster C, Shu E, et al. Wait times from presentation to treatment for colorectal cancer: a population-based study. Canadian journal of gastroenterology = Journal canadien de gastroenterologie 2010;24: 33-39.
10.  Neal RD. Do diagnostic delays in cancer matter? Br J Cancer 2009;101 Suppl 2: S9-S12.
11.  Raje D, La Touche S, Mukhtar H, Oshowo A, Clark CI. Changing trends in the management of colorectal cancers and its impact on cancer waiting times. Colorectal Dis 2006;8: 140-144.
12.  Departement of Health. Referral guidelines for suspected cancer. 2000.
13.  Departement of Health. The NHS Cancer plan: a plan for investment, a plan for reform. 2000.
14.  Korsgaard M, Pedersen L, Laurberg S. Delay of diagnosis and treatment of clorectal cancer–a population-based Danish study. Cancer Detect Prev 2008;32: 45-51.
15.  Bilimoria KY, Ko CY, Tomlinson JS, et al. Wait times for cancer surgery in the United States: trends and predictors of delays. Ann Surg 2011;253: 779-785.
16.  Blanc M, Dialla O, Manckoundia P, Arveux P, Dabakuyo S, Quipourt V. Influence of the geriatric oncology consultation on the final therapeutic decision in elderly subjects with cancer: analysis of 191 patients. The journal of nutrition, health & aging 2014;18: 76-82.
17.  Pressoir M, Desne S, Berchery D, et al. Prevalence, risk factors and clinical implications of malnutrition in French Comprehensive Cancer Centres. Br J Cancer 2010;102: 966-971.

CAN CONTINUOUS, INTER-GENERATIONAL COOPERATION POSITIVELY IMPACT THE QUALITY OF LIFE OF ELDERLY ALZHEIMER’S SUFFERERS?: AN INTERIM REPORT

 

R. Rokkaku1, A. Homma2, S. Kobayashi1, Y. Seki1

 

1. Tokyo University of Technology, Tokyo, Japan; 2. Dementia care training /study Tokyo center, Japan.

Corresponding Author: R. Rokkaku, School of Health Sciences, Department

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of Nursing, Tokyo University of Technology, 5-23-22 Nishikamata, Ohta-ku, Tokyo 144-8535, Japan, rokkaku@stf.teu.ac.jp, Tel +81 3-6424-2196

 

Abstract


This article summarizes the impact of inter-generational cooperation on the quality of life of elderly Alzheimer’s sufferers. The study is a continuing, two-year intervention and reports the results of the first year. It consists of an intervention and a control group of eight and six sufferers, respectively, who have been diagnosed with Alzheimer’s disease. Both groups attend day care services. The intervention group participates in the inter-generational program with children, while the control group does not. On the Philadelphia Geriatric Center Affect Rating Scale, three items have been proved statistically significant. Pleasure, Interest, and Contentment have increased with inter-generational cooperation. The magnitude of the change was not so remarkable as to influence QOL-AD at home. However, the present results may imply a reduction on the burden of the day care service staff and family carers. Another advantage may be in the educating of the children’s parents, whose understanding of dementia was poor.

 

Key words: Inter-generational cooperation, Alzheimer’s sufferers, children, quality of life.


 

Introduction

In Japan over recent years, a rising number of nuclear family households means fewer children live with elderly relatives. Between 1975 and 2010, the ratio of three- generation households, those with a head-of-household 65 years or older, relative to all other types of households, has steadily fallen from 11.8 to 6.9% (1). Therefore, interaction between children and senior citizens has been decreasing. Moreover, it seems that socio-economic conditions have changed in Japan, requiring young adults to relocate for work. This creates various problems that the elderly generation traditionally provides, such as emotional support, mentoring, babysitting services, and the teaching of customs to the youth generation.

Although a few results have been reported on the intergenerational program between the elderly persons and children, no results have been reported on the inter- generational cooperation between elderly persons with Alzheimer’s disease and children. An aim of the present study is to clarify the effect of an inter-generational program for Alzheimer’s sufferers through the cooperation with children. This is an interim report of the results of the first year of a continuing, two-year intervention from June 2012 to June 2014.

 

Subjects

The subjects of the study consist of the intervention group of eight Alzheimer’s sufferers and six Alzheimer’s sufferers for the control group, all of whom have been diagnosed with dementia of the Alzheimer’s type, based on the diagnostic criteria of DSM-IV-TR (2). Informed consent to participate in the study was obtained from the participants themselves, their carers, and the parents of the children. The intervention group attends day care services at one site in city A and participates in an inter- generational program with children. The control group attends services at another site, also in city A, and is not given the opportunity to interact with children. Both sites are operated by the same organization and the care staff of the both sites rotates at regular intervals to minimize the difference of care. Also, the condition of formal care services is strictly defined by the

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Long-Term Care Insurance Law in Japan.

 

Methods

The program consists of activities held every morning from 10 to 11:30, with such traditional crafts as making paper fans, carp streamers, rice cakes, toys, and dolls, singing traditional songs, and playing traditional games. All activities are planned one month in advance with the requirements that they are fun, easy-to-do, continuous and varied. The care staff are all nationally licensed nurses, care workers, care helpers, or nursery school teachers. Assessment are made every six months using the following scales: FAST (Functional Assessment Staging) (3) to measure severity of dementia, HDS-R (Hasegawa’s Dementia Scale, revised) (4) which is similar to MMSE and the most common simple psychometric scale in Japan, DAD (Disability Assessment for Dementia) (5) to measure ADL (activities of daily living), Behave-AD (Behavioral Pathology in Alzheimer’s Disease) (6) to measure behavioral complications, PGC-ARS (Philadelphia Geriatric Center-Affect Rating Scale) (7) to measure the status of the mood, and QOL-AD (Quality of Life in Alzheimer’s Disease) (8) to measure quality of life. A nurse administered HDS-R and evaluated FAST, DAD, Behave-AD, and QOL-AD based on the information of family carers. Also, the same nurse assessed PGC-ARS from the facial expressions and behaviors of the subjects.

In the analysis, the total scores of six scales were analyzed by analysis of variance between the groups. The main effects between the groups, interacting effects by time and the group and the items of DAD, Behave-AD, PGC-ARS and QOL-AD were also analyzed.

 

Results

Eight subjects of the intervened group and six subjects of the control group were assessed after 12 months. The demographics of the subjects, including mean age, severity of dementia, HDS-R scores, DAD, Behave-AD and QOL-AD, at the baseline and twelve months of the intervened group and the control group are shown in Table 1. No significant differences were found at the baseline between the intervention and the control groups. In the results of analysis of variance, no significant main effects of the group were found in the scores of FAST, HDS-R, DAD, Behave-AD and QOL-AD between the two groups. As to PGC-ARS, six items of the scale were separately analyzed. Although no significant main effect of the group were not found in the six items, significant interactive effects by the group and time were obtained in the items of pleasure (F (1, 13) =12.696 (p<0.001)), interest (F (1, 13) =5.793 (p<0.05)), and contentment (F (1, 13) =5.753 (p<0.05)) (Table 2, Fig. 1, Fig. 2).

In addition, although quantitative results are not available, understanding of dementia in the parents of the children participated in the study was increased through the cooperation with Alzheimer’s sufferers. The day service center for the intervened group conducts seasonal activity programs once a month as a program outside the long-term care insurance. Users, their relatives, neighbors, children, and their parents are invited to join the program. The number of participants, especially children with parents, has increased since the study began.

 

Table 1: Mean age and the scores of FAST, HDS-R, Behave-AD, DAD and QOL-AD at the baseline and 12 months in the intervention and the control groups.

 

Table 2: Philadelphia Geriatric Center-Affect Rating Scale: The scores of the baseline and 12 months in the intervened group and the control group.

 

Figure 1: Philadelphia Geriatric Center Affect Rating Scale: Pleasure (average score).

 

Figure 2: Philadelphia Geriatric Center Affect Rating Scale: Interest (average score).

 

Figure 3: Philadelphia Geriatric Center Affect Rating Scale: Contentment (average score).

 

Discussion

This is the first study to report a psychosocial intervention for people with Alzheimer’s disease through inter-generational cooperation with children. A lot of studies have reported on the effects of psychosocial intervention to maintain QOL of Alzheimer’s sufferers or reduce carers’ burden. However, there is no consensus on the psychosocial effects for Alzheimer’s sufferers and their carers. In conducting the present study, one advantage is that a kindergarten is managed by the same organization managing the day service centers, vital in enabling the study.

In the results, no differences were obtained in HDS-R, DAD, Behave-AD and QOL-AD between the groups. DAD, Behave-AD and QOL-AD were evaluated based on the information from carers. So this means the program had no psychosocial effects at home for the both groups regardless of number of uses of day services. However, significant interactive effects were obtained in the items of Pleasure, Interest, and Contentment of PGC-ARS. This implies that the positive affect of the intervened group has been maintained rather than the control group while attending the sessions in the day care service. This may reduce the burden on the staff caring for Alzheimer’s sufferers in the day care services.

The present results have three major limitations. The first one is the small number of subjects. Three and six subjects dropped out in the intervention and the control groups, respectively, during the twelve months. This complicates conclusions. If the subjects are limited to those with very early stage of Alzheimer’s disease, the number of subjects who dropped out would fall. However, it is difficult to access the subjects with very early Alzheimer’s disease under Japan’s long-term care insurance. The second limitation is that the method of the study is not a randomized controlled study. However, it is not possible to assign the subjects randomly since the inter-generational cooperation in the present study is a group program, not individual cooperation. The third limitation is that the effects to the staff, the children, and their parents are not quantitatively measured, while enlightening and educational effects to the parents of the children are apparent.

 

Conclusion

The positive effects of PGC-ARS Pleasure, Interest, and Contentment in the intervened group were maintained, where they were not in the control group. The magnitude of the change did not influence QOL-AD at home. However, the present results may imply the reduction of burden on the cay care service staff and family carers. Also, it might be useful to educate the parents of the children, whose understanding of dementia was poor.

 

Acknowledgements: This study has been fully funded by the Japanese Ministry of Education, Culture, Sports, Science and Technology. The authors thank the Alzheimer’s sufferers, children and their parents participating in this study.

Ethical standard: I provided a written and oral explanation of the study to the sufferers, their families, and the parents of the children, and they signed written consent forms to participate. All data was anonymized, then securely stored, handled, and finally disposed. All of these steps were pre-approved (No.E12HS-009) by University A’s Ethical Review Board.

Conflict of Interest: The authors have no conflicts of interest to disclose.

 

References

  1. National Institute of Population and Social Security Research. Vital Statistics of Japan, 2013. Available at: http://www.ipss.go.jp/syoushika/ tohkei/Popular/Popular2013.asp?chap=0. Cited 6 January 2014.

  2. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4th ed. text revised. Washington D.C.: APA; 2000.

  3. Sclan SG, Reisberg B. Functional Assessment Staging (FAST) in Alzheimer’s disease: reliability, validity, and ordinality. International Psychogeriatrics. 1992; 4 (03):55-69.

  4. Katou S. Revising the Hasegawa simple intelligence evaluation scale (HDS- R). Japanese Journal of Geriatric Psychiatry. 1991; 2:1339-1347.

  5. Gelinas I, Gauthier L, McIntyre M. Development of a functional measure for persons with Alzheimer’s disease. The disability assessment for dementia. American Journal of Occupational Therapy. 1999; 53:471-481.

  6. Reisberg B, Auer SR, Monteiro IM. Behavioral pathology in Alzheimer’s disease (BEHAVE-AD) rating scale. International Psychogeriatrics. 1997; 8:301-308.

  7. Lawton PM. Quality of life in Alzheimer’s disease. Alzheimer Disease Association Disorders. 1994; 8(3):138-150.

  8. Revell AJ. Quality of life in the Alzheimer’s disease (QoL-AD) scale: factor solutions in non-demented elders. University Park: Pennsylvania State University; 2002. p.5. Available at: http://www.uwpsychiatry. org/sls/QOL_AD_2002.pdf. Cited January 7, 2014.

  9. Phung KTT, Waldorff FB, Buss DV, et al. A three-year follow-up on the efficacy of psychosocial interventions for patients with mild dementia and their caregivers: the multicentre, rater-blinded, randomized Danish Alzheimer Intervention Study (DAISY). BMJ Open 2013;3:e003584. doi:10.1136/bmjopen-2013-003584.

  10. Carrion C, Aymerich M, Bailles E, Lopes-Bermejo A. Cognitive Psychosocial Intervention in Dementia: a Systematic Review. Dementia and Geriatric Cognitive Disorders. 2013; 36: 363-375.