Abstract
Caregivers (CG) of older adults suffering from Alzheimer disease (AD) are confronted by many challenges when caring for their family member; these include dietary management. Objectives: To identify difficulties in dietary management encountered by CG taking part in the Nutrition Intervention Study (NIS), and to gather their opinions on the intervention. Design, Setting and Participants: Thirty-three CG of individuals with AD from the NIS intervention group were contacted. Individual interviews were conducted and analyzed using qualitative data analysis, and themes around challenges related to dietary practices experienced by CG were identified. Results: Twenty-four CG were interviewed; 58% were aged 70 and older and 58% were the patient's spouse. Three major thematic categories emerged: 1. Dietary challenges and coping strategies used by CG; 2. CGs' opinion about the NIS; 3. CG interest in participating in a nutrition education support service. Changes in food habits and increasing dependency on the CG were the major themes related to dietary challenges. Conclusion: A better understanding of the CG's experience is essential for the development of nutrition interventions adapted to the needs of older adults with AD and their CG.
Key words: Caregiver, nutrition, Alzheimer, qualitative research
Introduction
Alzheimer disease (AD) is the most prevalent type of dementia (1) and in Canada, half of people with dementia live in the community (2., 3., 4.), usually with their spouse or adult children (5), who generally become their caregiver (CG).
Many studies have shown that dementia has a negative impact on the patient’s nutritional status (6., 7., 8., 9., 10., 11., 12., 13.). Food-related problems including lack of appetite and altered food preferences may cause significant weight loss and a subsequent increase in the risk of mortality (14, 15). The burden of caring for the AD patient may also have a negative influence on the CG’s health (16). Depression and poor quality of life are observed at disproportionately high rates among CG. As their family member’s autonomy and cognition decline, CGs face increasing challenges, including those related to management of the family member’s diet (1, 17).
The present study sought to identify dietary management difficulties encountered by CG of a family member with AD. The CG were participants in the “Nutrition Intervention Study” (NIS), an initiative using clinical dietetics practices to prevent weight loss and maintain dietary adequacy in community-dwelling older adults with AD (18). In addition to identifying CGs’ challenges, we also sought to gather their opinions on this intervention.
Methods
The NIS was a quasi-experimental pre-post nutritional intervention study conducted from the Centre de recherche of the Institut Universitaire de Gériatrie de Montréal (CRIUGM).
Eligible patients were aged 70 y or older, in early stage AD (stage 3-4 Reisberg/FAST scale or MMSE ≥ 22) and able to provide informed consent. They had no significant weight loss in the previous year, were in good physical health, had a willing caregiver and were French- or English-speaking. Participants were recruited in dyads (patient and CG) in memory and geriatric clinics of six university hospitals in Montreal. The groups consisted of 33 intervention dyads and 30 control dyads. Over a six month period, the intervention group received individualized nutritional support and the control group received regular healthcare. A detailed description of the nutrition intervention was published elsewhere (18). The study was approved by the Institutional Review Board (21) at the CRIUGM and by the IRB of each participating hospital.
At recruitment into the study, select data were collected on CG characteristics (age, gender, civil status, living situation). The main variables of interest in the present study were CG burden measured by the Zarit Burden Interview score (19, 20), their difficulties with dietary management in the care of their family member and their satisfaction with the nutritional intervention.
A semi-structured questionnaire was developed; it included introductory questions and a series of questions on dietary practices, changes in food preferences and feeding difficulties in the care of their family members with AD. We also queried CG satisfaction with the NIS. The questionnaire was developed in French, translated into English, and then back-translated into French to verify the translation.
The telephone interview was guided by the semi-structured questionnaire and CGs were interviewed in their preferred language (French or English). The interviews were recorded Received January 2, 2012 using the Digital Voice Recorder WS-100, Olympus), via a device connected to the telephone (Callcorder model 7202874I Omega electronics Inc). They were transcribed using Word 2003 (©Microsoft Office) and Windows Media Player (Version 12, Microsoft Inc) software.
A thematic analysis was carried out (22). An inductive coding process was used and keywords derived to represent themes around challenges in dietary management experienced by CG, as well as their opinions on the NIS. First, the NIS principal investigator (BS) and the interviewer (PS) independently read the entire interview transcript. They marked extracts they considered most relevant and designated a theme for each one, thereby creating two lists of themes that were subsequently merged by PS. These themes were grouped into categories and subcategories. In addition, a description was attributed to each category, subcategory and theme in order to ensure the reliability of coding. This list was checked for consistency and entered into NVivo (version 8.0, QSR International®). Second, BS and PS independently coded three randomly selected transcripts into NVivo. PS coded the remaining transcripts. All coding done by the interviewer was checked for consistency during meetings with the NIS principal investigator. The coding was done using minimal interpretation in order to best capture CG perceptions. Finally, a report was created including categories, subcategories, themes, coded quotations and the number of individuals in each of the categories, subcategories, and themes. The French-language transcript extracts were then translated into English by the interviewer for publication and the translation was verified by the NIS principal investigator.
Results
Of the 33 intervention group CG, 24 (72.3%) were interviewed. Reasons for refusing to participate were lost contact (n=2) and not interested (n=7). Eighteen interviews were conducted in French and six in English. The mean interview time was 22±9 minutes.
The majority of CG were aged 70 years or older (58.4%), Francophone (75.0%) and were the spouse of the individual with AD (58.3%) (Table 1). Their mean age was 70.9±10.8 years and most were retired or did not work professionally (62.5%). Most CG lived with a partner (70.8%), mainly the affected family member (79.2%). The level of burden was stable over the course of the six-month study; ZBI score=27.3±12.3 and 29.1±14.3, p=0.16, T1 and T2, respectively, corresponding to a mild to moderate level of burden at both assessments.
Table 1.
Profile of participating CG1 from the NIS2 intervention group (n = 24)
| Characteristics | n (%) | |
|---|---|---|
| Gender | Male | 12 (50.0) |
| Age (years) | < 55 | 2 (8.3) 8 (33.3) |
| 55-69 | ||
| 70-79 | 7 (29.2) 7 (29.2) | |
| 80-89 | ||
| Language | French | 18 (75.0) |
| English | 6 (25.0) 17 (70.8) | |
| Living situation | With a partner | |
| With other family members | 4 (16.7) | |
| In a religious community | 2 (8.3) 1 (4.2) | |
| Alone | ||
| CG lives with the relative with AD3 | Yes | 19 (79.2) |
| No | 5 (20.8) 14 (58.3) | |
| Relationship to the relative with AD | Spouse | |
| Adult son/daughter | 6 (25.0) 2 (8.3) | |
| Religious community colleague | ||
| Nephew | 1 (4.2) | |
| Sister | 1 (4.2) | |
| Occupation | Not working | 15 (62.5) |
| Working | 9 (37.5) | |
| T1 burden (Zarit) | None or very low | 7 (29.2) 15 (62.5) |
| Low to moderate | ||
| Moderate to severe | 2 (8.3) 6 (26.1) | |
| T2 burden (Zarit)* | None or very low | |
| Low to moderate | 12 (52.2) | |
| Moderate to severe | 5 (21.7) 6 (27.3) | |
| Number of years as CG** | < 1 year | |
| 1 - 2 years 3 - 4 years | 8 (36.4) 5 (22.7) | |
| ≥ 5 years | 3 (13.6) |
1. Caregivers; 2. Nutrition Intervention Study; 3. Alzheimer disease; T1 = baseline of NIS study; T2 = end of NIS study (6 months after);
n = 23 (1 CG refused to complete the Zarit Burden Interview questionnaire (19);
n = 22 (2 CG did not provide this information)
Half of the 24 relatives with AD were 70 to 79 years old and the remainder were aged 80 to 89. The majority were women (67%) and Francophone (79%). Most had some secondary education or had completed secondary (42%) or university studies (21% had a bachelor’s degree and 21% had a master’s or doctorate), while a few had attended junior college (8%); small proportions had only primary schooling (4%) or no education (4%). The majority of AD patients (71%) lived with another person (CG, spouse, sibling, or friend), 21% lived alone and 8% lived in a religious community (data not shown).
Three major thematic categories emerged from the interviews (Tables 2 to 5). In all, 561 citations were coded and all 24 CG provided comments on the three thematic categories.
Table 2.
“Dietary challenges and coping strategies used by CG1“ and themes coded from interviews with CG
| Category 1 | Sub categories | Main themes |
|---|---|---|
| Dietary challenges and coping strategies used by CG (n = 24) | Changes in the patient’s food habits (n = 22) | Modified food preferences (n = 12) Food intake decrease (n = 11) Appetite decrease (n = 7) Food diversity decrease (n = 6) |
| Difficulties with dietary management (n = 24) | Patient’s autonomy decrease (n = 15) Forgetting meals (n = 7) No difficulties (n =7) Comorbidities (n = 4) CG’s unavailability (n = 4) |
n = number of CG who made comments about this subject. 1. Caregivers
Table 5.
“CG1 interest in participating in a nutrition education support service” and themes coded on the CG interviews
| Category 3 | Sub categories | Main themes |
|---|---|---|
| CG interest in participating in a possible nutrition education support service (n = 22) | Motivators to participate (n = 12) | Concerns about caring for or feeding the patient (n = 3) Improve knowledge about nutrition (n = 3) Eating habits stimulation (n = 1) Belief in the potential effects of nutrition on AD2 (n = 1) Health benefits for the CG and the patient (n = 1) Helps scientific research on AD (n = 1) Patient in advanced phase of the disease (n =1) Can receive service without leaving home (n =1) |
| Barriers to participate (n = 13) | Lack of time (n = 6) Not interested (n = 4) Transportation difficulties if the NIS took place face to face (n = 1) CG overburdened (n = 1) Patient eats outside home (n = 1) |
n = number of CG who commented on this issue. 1. Caregivers; 2. Alzheimer disease
Category 1 - Dietary challenges and coping strategies used by CG
The main dietary challenges involved modifications of the affected individual’s food preferences (n=12; 50%), and decreases in food intake and appetite (n=11; 46% and n=7; 29%, respectively) as shown in Table 2. For example:
“Well, well, let’s say that he is much less tolerant. There were things he used to eat before, for example, he ate chicken, then. Not that he had to, but now he doesn’t want. Although he still eats from time to time, but … he doesn’t like it anymore. Red meat he used to eat; now he no longer wants it. And it’s very, very, very small amount.” (woman, spouse, 73 years-old).
Specific problems related to dietary practices described by CG were decreases in the relative’s autonomy (n=15; 63%) and the fact that meals were frequently forgotten (n=7; 29%). One CG stated:
“The only difficulty I have is when I’m not there. When I am away, because I still work … at this time, there is Meals on Wheels … that’s, that’s good. Meals on Wheels, he had it for in lunch. So it was good for him. But then, during vacations, Meals on Wheels stopped and I realize that if I don’t prepare lunch, he eats too little.” (woman, spouse, 68 years-old)
Despite the frequent challenges described in Table 2, some CG (n=7; 29%) denied having any difficulty with managing their relative’s diet. Furthermore, CG described interesting strategies for coping with these dietary challenges (Table 3).
Table 3.
Coping strategies used by CG1 related to management of dietary practices during the care of their relative with AD2
| • Verbally motivate the family member to eat (n = 3) | • Watch TV during meals (n = 1) |
|---|---|
| • Play tricks during the meal (e.g.CG) | |
| • Go grocery shopping together (n = 3) | transfers some food from his plate |
| • Prepare the meal in advance (n= 2) | to relative’s plate without him |
| • Call relative to remind him/her to eat or to | noticing) (n = 1) |
| explain how to heat or prepare meals (n = 2) | • Avoid consumption of certain foods |
| • Leave written instructions about how to prepare | (e.g. sweets) (n = 1) |
| meals (n = 2) | • Monitor dishes to check if the |
| • Monitor food safety (n = 2) | relative has eaten (n = 1) |
| • Provide relative’s favorite meals (n = 2) | • Leave a water bottle to remind |
| • Eat in a restaurant (n = 2) | relative to drink water (n = 1) |
| • Eat together (n = 1) |
n = number of CG who commented on this issue; 1. Caregivers; 2. Alzheimer disease
Category 2 - CGs’ opinion of the NIS intervention
Many CG applied the suggestions provided by the NIS dietitian, reporting that they considered them very useful (Table 4). They stated that the dietary advice helped their relative eat more high-protein foods, foods rich in vitamin D and calcium, vegetables and fruits, and specifically green vegetables, as well as legumes and fish. In addition, CG cited specific recommendations provided by the dietitian, for example about choosing high-protein foods. For example:
Table 4.
“CGs’1 opinion about the NIS” and themes coded from the CG interviews
| Category 2 | Sub categories | Main themes |
|---|---|---|
| CG’s opinion about the | Counseling usefulness (n = 19) | Increasing patient’s intake of certain nutrients (protein, calcium, vitamin D) (n =) |
| NIS2 (n = 24) | 6) | |
| Increasing the patient’s intake of certain foods (fruits, vegetables, legumes and) | ||
| fish) (n = 5) | ||
| Appreciation of the plasticized teaching document with magnets to put on the | ||
| refrigerator (n = 4) | ||
| Increase on CG’s confidence (n = 3) | ||
| Help on motivating the patient to eat well (n = 2) | ||
| Telephone and email service usefulness (n = 21) | Not needed (n = 12) | |
| Telephone and email service appreciated (n = 5) | ||
| Email service not used (n = 4) | ||
| Written material appreciation (n = 23) | Good quality and easy to understand (n = 20) | |
| Food intake analysis appreciated (n = 5) | ||
| Not interested to read it (n =1) | ||
| Nutrition follow-up (n = 23) | 6 months follow-up appreciated (n = 17) | |
| Good quality (n = 8) | ||
| Follow-up longer than 6 months not desired (n = 7) | ||
| Follow-up shorter than 6 months not desired (n = 2) | ||
| Relationship with the NIS team (n = 18) | Good appreciation in general (n = 11) | |
| Empathy (n = 6) | ||
| NIS team concerned with the CG and the patient (n = 4) | ||
| NIS team proficiency (n = 21) | Competent team (n = 12) | |
| In tune (n = 10) | ||
| Satisfactory answers to CG’s questions (n = 6) | ||
| NIS and impact on patient’s and CG’s quality of life | Little or no improvement in CG’s or patient’s quality of life (n =10) | |
| (n = 23) | Quality of life associated with quality of patient’s or CG’s nutrition (n = 8) | |
| Consciousness of CG’s or patient’s nutrition (n = 8) | ||
| CG assurance regarding patient’s nutrition (n = 5) | ||
| NIS benefits (n =19) | Knowledge about nutrition and consciousness of good eating habits (n = 11) | |
| Benefits in general (n = 9) | ||
| Factors that have minimized the impact of the | Good eating habits (n = 8) | |
| NIS (n = 14) | CG reluctance on following NIS counseling (n = 3) | |
| The patient lives alone (n = 2) | ||
| CG sees no need for the NIS (n = 1) | ||
| Suggestions for improving the nutritional service | No suggestions (i.e. satisfaction with the NIS) (n = 8) | |
| (n = 18) | More face-to-face contact (n = 3) | |
| Provide counseling about nutrition and memory loss (n = 2) | ||
| Provide blood test analysis (n = 1) | ||
| Provide a cookbook for CG (n = 1) | ||
| Increase the frequency of the documentation given to CG to improve motivation (n = 1) | ||
| (n = 1) Provide counseling about dysphagia (n = 1) | ||
| Provide help in food preparation (n = 1) | ||
| Opinion about the food record (FR) (n = 7) | Skepticism about its validity (n = 5) | |
| FR extreme precision and its relevance (n = 1) | ||
| FR is one more burden (n = 1) |
n = number of CG who commented on this issue; 1. Caregivers; 2. Nutrition Intervention Study.
“We had on our refrigerator a plastic sheet with dietary recommendations. (Name of NIS dietitian) told us to take protein. In fact, we choose the menus according to this plan.
We take more protein at this time …… then, there is peanut
butter … and foods high in calcium. When you buy something, it is based on that sheet. It changed. I got advantage of that myself too. “(man, spouse, 80 years-old)
Half of CG saw no need for the telephone or e-mail “SOS dietitian” service mainly because they found that the telephone contact with the NIS dietitian during the follow-up provided sufficient opportunities for them to ask questions. However, five CG (21%) appreciated the NIS telephone and email service because it saved time and the cost of transportation.
Most CG (n=20; 83%) considered that the written material provided by the NIS was of good quality and easy to understand. In addition, the nutritional analysis report on the family member’s food intake was particularly appreciated by several CG (n=5; 21%).
Seventeen CG (71%) appreciated the 6 month follow-up and eight (33%) were impressed by its quality. Eleven CG (61%) were highly appreciative of the NIS team. CG cited the NIS team’s empathy (n=6; 25%) and four (17%) commented that they felt that the research team was genuinely interested in the CG and their family member. Most CG (n=21; 88%) commented on the proficiency of the NIS team.
Among the benefits resulting from participation in NIS, 11 CG (46%) cited an increase in their own knowledge of nutrition and greater awareness of the importance of good eating habits. For example:
“Well, because it (the NIS) has… has stimulated us … (laughs) to buy things ah … It has stimulated us to change our habits a little bit … I think it remains after … because we have always in mind that when we prepare a vegetable soup… something like that, well, we … we will put what was recommended.” (woman, daughter, 57 years-old)
However, they also cited some factors that may have minimized the impact of the NIS, such as their opinion that they considered their eating habits were already good (n=8; 33%). Finally, 18 CG (75%) provided suggestions for improving the nutritional service, as shown in Table 4.
Category 3 - CG interest in participating in a nutrition education support service
Table 5 shows that half of the CG was interested in taking part in a nutrition education program. Several factors were mentioned that could motivate their participation, such as their desire to feed and care for their relative adequately, learn more about nutrition, and provide motivation for the CG and the family member with AD to improve their eating habits. For example, one CG said:
“Because it is always to improve the quality of life of my spouse. This is very important for me, you know … to improve anything that would benefit for my spouse, who finally did for me too.” (woman, spouse, 65 years-old)
Lack of time was the most frequently cited factor limiting participation in a nutrition education program.
Discussion
The advanced age of the participants and the distribution of spouses and adult children in our sample are consistent with the observed profile of CG in many studies (21, 23., 24., 25.). Although most NIS CG did not work professionally, a considerable number of them had a professional activity (37.5%) despite their advanced age. This is similar to findings from the Canadian Study on Health and Aging (CSHA) where a significant proportion of CG of community-living relatives with
AD (29.3%) had a professional activity (25).
The level of CG burden as assessed by the Zarit scale did not decrease following the NIS study. It is possible that a larger sample size may have better demonstrated how a nutritional intervention could help to reduce the burden felt by CG. However, as reported by Rivière et al (2001), NIS CG experienced benefits as a result of the intervention, such as more confidence in their food selection and preparation practices when caring for relatives with AD and better nutrition knowledge. This is consistent with recommendations that interventions targeting caregiver support should stimulate the knowledge and skills of CG and not simply try to reduce or eliminate the negative effects of care, such as the burden (26, 27).
CG face many challenges in caring for relatives with AD, including those related to management of dietary practices. Numerous eating disturbances, such as eating resistance, lack of appetite and altered food preferences have been observed in previous studies of people suffering from dementia (9, 28., 29., 30.). Inadequate food intake was also observed in such individuals (13, 31), which over time could lead to malnutrition, weight loss and increased risk of mortality (11, 14). Decreases in food consumption with progression of the disease may be due to poor appetite and could be related to depression, which occurs among most individuals with AD, particularly in the initial phases of the disease (32, 33).
NIS CG also indicated some meal-related disturbances in their relatives such as forgetting to eat. AD typically results in alterations in episodic memory in the affected individual, typified by inability to recall whether he or she has eaten (34). With disease progression, patient autonomy is often compromised and difficulties in self-feeding may lead to poor nutritional status (28, 35).
Despite the fact that CG of community-dwelling older adults with dementia report less satisfaction with support services compared to those caring for individuals with other health problems (25), NIS CG reported their appreciation of the intervention, particularly the written documentation they received, and the empathy and proficiency of the NIS team (36., 37., 38., 39.). CG also praised the individualized counseling provided by the NIS dietitian. With the progression of dementia, feeding difficulties may become a major challenge given the patient’s reduced autonomy at mealtimes (14, 35, 40) and this approach appears to be essential to success in intervention with this clientele.
This study has limitations. Participants in qualitative research are typically invited to review the themes that emerge from analysis to determine whether they adequately represented their intentions. However, we had already engaged the CG in several activities during their participation in the NIS (acting as resource person, helping with the patient’s food record, attending visits with the dietitian), and they continued to fulfill numerous responsibilities related to the ongoing care of their relatives with AD. Consequently, we were reluctant to impose more study-related tasks to avoid further increasing their burden and did not ask them to review the themes.
Conclusion
This study provides important insights for overcoming challenges relate to nutritional care of older adults with AD and for maximizing CG satisfaction with nutritional interventions. A better understanding of the caring experience is essential to identify food-related coping practices of family CG of those with AD and to develop more effective nutrition interventions in response to the needs of community-dwelling family members with AD and their CG.
Acknowledgements
The authors gratefully acknowledge the participation of the patients and their caregivers, and the contribution of the NIS team of research dietitians (Isabelle Reid, Marie-Eve Chicoine, Lafira Vaz, Joane Matta). The Nutrition Intervention Study was funded by the Alzheimer Society of Canada, grant number # 0771. Patricia Silva was supported by bursaries from the Département de nutrition and the Faculté des études supérieures et postdoctorales of Université de Montréal.
Disclosures
The authors have no conflicts of interest to report.
References
- 1.Blennow K., de Leon M.J., Zetterberg H. Alzheimer’s disease. Lancet. 2006;29;368(9533):387–403. doi: 10.1016/S0140-6736(06)69113-7. 10.1016/S0140-6736(06)69113-7 [DOI] [PubMed] [Google Scholar]
- 2.Hill G., Forbes W., Berthelot J.M., Lindsay J., McDowell I. Dementia among seniors. Health Rep. 1996;8(2):7–10. PubMed PMID: 9110965. [PubMed] [Google Scholar]
- 3.Lindsay J., Sykes E., McDowell I., et al. More than the epidemiology of Alzheimer’s disease: contributions of the Canadian Study of Health and Aging. Can J Psychiatry. 2004;49(2):83–91. doi: 10.1177/070674370404900202. PubMed PMID: 15065741. [DOI] [PubMed] [Google Scholar]
- 4.McDowell I., Hill G., Lindsay J. An Overview of the Canadian Study of Health and Aging. International Psychogeriatr. 2001;13(suppl.l):7–18. doi: 10.1017/s1041610202007949. 10.1017/S1041610202007949 [DOI] [PubMed] [Google Scholar]
- 5.Turcotte M, Schellenberg G (2006). A Portrait of Seniors in Canada. In: Statistics Canada, Social and Aboriginal Statistics Division, editors. Ottawa.
- 6.Cronin-Stubbs D., Beckett L.A., Scherr P.A., et al. Weight loss in people with Alzheimer’s disease: a prospective population based analysis. BMJ. 1997;314(7075):178–179. doi: 10.1136/bmj.314.7075.178. 10.1136/bmj.314.7075.178 PubMed PMID: 9022430. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Curfman S. Managing dysphagia in residents with dysphagia. Nurs Homes & Senior Citizen Care. 2005;54(8):18–27. [Google Scholar]
- 8.Gillette Guyonnet S., Abellan Van Kan G., Andrieu S., et al. IANA task force on nutrition and cognitive decline with aging. J Nutr Health Aging. 2007;11(2):132–152. PubMed PMID: 17435956. [PubMed] [Google Scholar]
- 9.Holm B., Soderhamn O. Factors associated with nutritional status in a group of people in an early stage of dementia. Clin Nutr. 2003;22(4):385–389. doi: 10.1016/s0261-5614(03)00035-9. 10.1016/S0261-5614(03)00035-9 PubMed PMID: 12880606. [DOI] [PubMed] [Google Scholar]
- 10.Rivière S., Gillette-Guyonnet S., Voisin T., et al. A nutritional education program could prevent weight loss and slow cognitive decline in Alzheimer’s disease. J Nutr Health Aging. 2001;5(4):295–299. PubMed PMID: 11753499. [PubMed] [Google Scholar]
- 11.White H., Pieper C., Schmader K. The association of weight change in Alzheimer’s disease with severity of disease and mortality: a longitudinal analysis. JAGS. 1998;46(10):1223–1227. doi: 10.1111/j.1532-5415.1998.tb04537.x. [DOI] [PubMed] [Google Scholar]
- 12.White H., Pieper C., Schmader K., Fillenbaum G. Weight change in Alzheimer’s disease. JAGS. 1996;44(3):265–272. doi: 10.1111/j.1532-5415.1996.tb00912.x. [DOI] [PubMed] [Google Scholar]
- 13.Shatenstein B., Kergoat M.-J., Reid I. Poor nutrient intakes during 1-year follow-up with community-dwelling older adults with early-stage Alzheimer dementia compared to cognitively intact matched controls. J Amer Diet Assoc. 2007;107(12):2091–2099. doi: 10.1016/j.jada.2007.09.008. 10.1016/j.jada.2007.09.008 [DOI] [PubMed] [Google Scholar]
- 14.Gillette-Guyonnet S., Nourhashemi F., Andrieu S., et al. Weight loss in Alzheimer disease. Am J Clin Nutr. 2000;71(2):637S–642S. doi: 10.1093/ajcn/71.2.637s. PubMed PMID: 10681272. [DOI] [PubMed] [Google Scholar]
- 15.White H. Weight change in Alzheimer’s disease. J Nutr Health Aging. 1998;2(2):110–112. PubMed PMID: 10993578. [PubMed] [Google Scholar]
- 16.Allen I, Perkins E (1995). The Future of Family Care for Older People. London.
- 17.Pitaud P. Exclusion, maladie d’Alzheimer et troubles apparentées: le vécu des aidants. Ères; Paris: 2007. [Google Scholar]
- 18.Shatenstein B., Kergoat M.J., Reid I., Chicoine M.E. Dietary intervention in older adults with early-stage Alzheimer dementia: early lessons learned. J Nutr Health Aging. 2008;12(7):461–469. doi: 10.1007/BF02982707. 10.1007/BF02982707 PubMed PMID: 18615228. [DOI] [PubMed] [Google Scholar]
- 19.Zarit S.H., Orr N.K., Zarit J.M. The hidden victims of Alzheimer’s disease. New York University Press; New York: 1985. [Google Scholar]
- 20.Zarit S.H., Reever K.E., Bach-Peterson J. Relatives of the Impaired Elderly: Correlates of Feelings of Burden. Gerontologist. 1980;20(6):649–655. doi: 10.1093/geront/20.6.649. 10.1093/geront/20.6.649 PubMed PMID: 7203086. [DOI] [PubMed] [Google Scholar]
- 21.Morris C.H., Hope R.A., Fairbum C.G. Eating habits in dementia. A descriptive study. Br J Psychiatry. 1989;154:801–806. doi: 10.1192/bjp.154.6.801. 10.1192/bjp.154.6.801 PubMed PMID: 2597886. [DOI] [PubMed] [Google Scholar]
- 22.Pope C., Mays N. Qualitative research in health care. 3rd ed. Blackwell Publishing; Oxford: 2006. 10.1002/9780470750841 [Google Scholar]
- 23.Black S.E., Gauthier S., Dalziel W., et al. Canadian Alzheimer’s disease caregiver survey: baby-boomer caregivers and burden of care. Int J Geriatr Psychiatry. 2009;25(8):807–813. doi: 10.1002/gps.2421. 10.1002/gps.2421 [DOI] [PubMed] [Google Scholar]
- 24.Germain S., Adam S., Olivier C., et al. Does cognitive impairment influence burden in caregivers of patients with Alzheimer’s disease? J Alz Dis. 2009;17(1):105–114. doi: 10.3233/JAD-2009-1016. [DOI] [PubMed] [Google Scholar]
- 25.The Canadian Study of HealthAging Working Group Patterns of caring for people with dementia in Canada: the Canadian Study of Health and Aging. Can J Aging. 1994;13(4):470–487. 10.1017/S0714980800006334 [Google Scholar]
- 26.Acton G.J., Kang J. Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis. Res Nurs Health. 2001;24(5):349–360. doi: 10.1002/nur.1036. 10.1002/nur.1036 PubMed PMID: 11746065. [DOI] [PubMed] [Google Scholar]
- 27.Sorensen S., Pinquart M., Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–372. doi: 10.1093/geront/42.3.356. 10.1093/geront/42.3.356 PubMed PMID: 12040138. [DOI] [PubMed] [Google Scholar]
- 28.Ikeda M., Brown J., Holland A.J., Fukuhara R., Hodges J.R. Changes in appetite, food preference, and eating habits in frontotemporal dementia and Alzheimer’s disease. J Neurol Neurosurg Psychiatry. 2002;73(4):371–376. doi: 10.1136/jnnp.73.4.371. 10.1136/jnnp.73.4.371 PubMed PMID: 12235302. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Keller H.H., Edward H.G., Cook C. Mealtime experiences of families with dementia. Am J Alzheimers Dis Other Demen. 2007;21(6):431–438. doi: 10.1177/1533317506294601. 10.1177/1533317506294601 [DOI] [PubMed] [Google Scholar]
- 30.Rivière S., Gillette-Guyonnet S., Andrieu S., et al. Cognitive function and caregiver burden: predictive factors for eating behaviour disorders in Alzheimer’s disease. Lit J Geriatr Psychiatry. 2002;17(10):950–955. doi: 10.1002/gps.724. 10.1002/gps.724 [DOI] [PubMed] [Google Scholar]
- 31.Manthorpe J., Watson R. Poorly served? Eating and dementia. J Adv Nursing. 2003;41(2):162–169. doi: 10.1046/j.1365-2648.2003.02520.x. 10.1046/j.1365-2648.2003.02520.x [DOI] [PubMed] [Google Scholar]
- 32.Blazer D.G. Depression in Late Life: Review and Commentary. Focus. 2009;7(1):118–136. [Google Scholar]
- 33.Rubin E.H., Veiel L.L., Kinscherf D.A., Morris J.C., Storandt M. Clinically significant depressive symptoms and very mild to mild dementia of the Alzheimer type. Int J Geriatr Psychiatry. 2001;16(7):694–701. doi: 10.1002/gps.408. 10.1002/gps.408 PubMed PMID: 11466748. [DOI] [PubMed] [Google Scholar]
- 34.Nestor P.J., Anthony H.V.S., Edward B., et al. Disorders of Memory. Neurology and Clinical Neuroscience. Mosby; Philadelphia: 2007. pp. 43–57. [Google Scholar]
- 35.Tully M.W., Matrakas K.L., Muir J., Musallam K. The Eating Behavior Scale. A simple method of assessing functional ability in patients with Alzheimer’s disease. J Gerontol Nurs. 1997;23(7):9–15. doi: 10.3928/0098-9134-19970701-08. PubMed PMID: 9287601. [DOI] [PubMed] [Google Scholar]
- 36.Brodaty H., Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11(2):217–228. doi: 10.31887/DCNS.2009.11.2/hbrodaty. PubMed PMID: 19585957. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 37.Gantert T.W., McWilliam C.L., Ward-Griffin C., Allen N. Working it out together: family caregivers’ perceptions of relationship-building with in-home service providers. Can J Nurs Res. 2009;41(3):44–63. PubMed PMID: 19831054. [PubMed] [Google Scholar]
- 38.Massoud F., Lysy P., Bergman H. Care of Dementia in Canada: A collaborative Care Approach with a Central Role for the Primary Care Physician. J Nutr Health Aging. 2010;14(2):105–116. doi: 10.1007/s12603-010-0020-2. 10.1007/s12603-010-0020-2 PubMed PMID: 20126957. [DOI] [PubMed] [Google Scholar]
- 39.Schoenmakers B., Buntinx F., Delepeleire J. What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative? A systematic literature review. Scand J Prim Health Care. 2009;27(1):31–40. doi: 10.1080/02813430802588907. 10.1080/02813430802588907 PubMed PMID: 19040191. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 40.Amelia E.J. Resistance at mealtimes for persons with dementia. J Nutr Health Aging. 2002;6(2):117–122. [PubMed] [Google Scholar]