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Article
Dementia informal caregiver obtaining and engaging in food-related information and support services
Dementia 0(0) 1–11 ! The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301215583148 dem.sagepub.com
Iliatha Papachristou Department of Applied Health Research, UCL, UK
Gary Hickey Centre for Public Engagement, Kingston University and SGUL, UK
Steve Iliffe Department of Primary Care & Population Health, UCL, UK
Abstract As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers’ perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers’ experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. ‘Direct food-related Information’, covers written material, training, ‘Direct food-related informal support’: lunch clubs, ‘Indirect non-food related formal support services’ covers respite services and domestic help at home. Finally ‘no services required’ covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs. Keywords dementia, food-related services, caregiving, social support, education and information, informal carer
Corresponding author: Iliatha Papachristou, Department of Applied Health Research, UCL, 1–19 Torrington Place, London WC1E 7HB, UK. Email: [email protected]
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Introduction Informal caregivers are defined as people caring for a family member, friend or neighbour (Bass et al., 2013). There are a number of services for informal dementia caregivers that have been designed to decrease negative outcomes for the caregiver, for example depression and anxiety, and improve positive outcomes such as self-esteem and competence (Pinquart & Sorenton, 2006; Nelis, Quinn, & Clare, 2007; Parker, Mills, & Abbey, 2008). Services such as respite-care or day centres for people with dementia allow caregivers to recharge and experience temporary relief for a short period of time (Salin, Kaunonen, & Astedt-Kurki, 2009; Robinson, Buckwalter, & Reed, 2013). There are social support services, such as health professionals informing carers of ways of how to adapt to difficult situations in the form of training, by providing written information or through peer support activities, such as organised social events (Pinquart & Sorenton, 2006). All these help the carer to continue assisting the person with dementia at home, by providing them with respite and/or by enabling them to develop better coping skills (Gaugler et al., 2003). There are also educational services, such as training and the provision of written information. Information and support services in the food-related domain are increasingly being brought to the foreground, particularly within policy agendas (Winterfeldt, 2001). Foodrelated behaviours, such as difficult mealtime behaviour, create stress for the caregiver particularly if they are depressed and socially isolated and without any support (Rivie`re, Gillette-Guyonnet, & Voisin, 2001). Furthermore, as dementia progresses, caregivers’ responsibilities in food-related processes increase. Caregivers often manage the decline of food-related abilities on their own and with minimum support (Manthorpe & Watson, 2003). These caregivers may experience burden because they do not have the necessary coping skills or knowledge (Brodaty & Donkin, 2009). Therefore, providing updated information and social support can be beneficial, as they act as a mediator that decreases burden (Miller et al., 2001). There are some food-related support services available. A service offered to people with dementia, that caregivers find useful, is Meals-on-Wheels (cooked or frozen meals delivered to their home) (Reynish, Andrieu, Nourhashemi, & Vella, 2001). In the UK, the Alzheimer’s Society (AS) run a cafe´ designed to enable caregivers and the recipients of care to relax in an informal atmosphere with others in a similar situation (Halley, Boulton, Mcfadzean, & Moriarty, 2005). This is valued by people caring for someone who is less able to sit down in a conventional restaurant or cafe´ for any length of time (Keller et al., 2008). The provision of social support, such as lunch or cafe´ clubs for people with dementia also gives informal caregivers an opportunity for respite (Mather, 2006). A review by Manthorpe and Watson (2003) indicated that food-related support services have had a positive impact on the dementia caregiver and their care-recipients as they decrease distress, increase enjoyment and positive care (Winterfeldt, 2001). In addition, those people with dementia who attend lunch or cafe´ clubs are less likely to need help eating meals than non-attendees (Williams, Dearden & Camaron, 2001). Keller et al. (2008) assert that the lack of accessibility and provision of food-related information to caregivers should be investigated, while Papachristou, Giatras, and Ussher (2013) argue that the required types of food-related support intervention should be identified. The research reported here is part of a broader study which aimed to investigate the impact of dementia progression on food-related activities, i.e. with shopping, preparation and eating (Papachristou et al., 2013) from the perspective of the
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informal carer. The study is the first to explore informal caregivers’ perspectives of dementia food-related information and support services in terms of their experiences and needs.
Aims The aim of this paper is to investigate informal caregivers’ experiences of, and views on, food-related information and support services in dementia.
Methods Participants The participants were 20 informal caregivers (family, friends or neighbours) looking after people with dementia at home (Table 1). All of the caregivers manage the food-related activities of the care recipients. Data were collected via semi-structured, face-to-face interviews with each of the 20 caregivers. All the interviews took place in the caregiver’s home or in a private room in a public library during an 8-week period, with the interviews lasting 20 to 30 minutes.
Recruitment Participants were recruited by advertising, via leaflets and posters, in a local chemist, a community centre, and a national charity (AS) in South West London. In addition, some participants were recruited by the snowballing technique (Ritchie, Lewis, McNaughton, & Ormston, 2014); health care professionals working with dementia and older adults were also Table 1. Demographics of participants and stage of dementia. Pseudonym name of caregiver
Relationship to recipient
Severe/moderate/mild
Maggie Jeff Ana Tammy Wendy Duncan Rita Dave Mary Betty Fran Andrew Sid Danny Henry Patrick Robert Juliet George Trisha
Friend Son Sister Wife Wife Husband Wife Son Wife Wife Wife Husband Husband Son Husband Son Husband Sister Husband Wife
Severe Moderate Mild Moderate Moderate Moderate Moderate Moderate Moderate Moderate Moderate Mild Mild Severe Moderate Severe Moderate Moderate Severe Severe
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contacted and asked to recommend potential participants. Those providing contact details were telephoned to further explain the study and to arrange an interview. Written informed consent was obtained from each carer and, if possible, from the person with dementia. Before the interview, an information sheet and consent form were posted to the participants. People with dementia, who had the capacity to understand and be informed about the study, were also sent an information sheet and a form to consent to their caregiver being interviewed. Capacity to give consent was ascertained by their caregiver. If the person with dementia lacked the capacity to give consent, the informal caregiver acted in his or her best interest. Ethical approval was granted by the University of Surrey Ethics Committee. All participants were given pseudonyms. These are shown in table along with demographic characteristics. Participants were asked questions about their experiences of (1) obtaining information about food and dementia; (2) if they received professional help and advice in this area and (3) what food-related services they would find beneficial.
Data analysis All interviews were recorded and transcribed verbatim. Each of the transcripts were then thematically analysed by a researcher so that themes or patterns were identified from each participant independently, broadly using the approach outlined by Braun and Clarke (2006). The researcher used both an inductive and deductive approach. An analytical framework was derived from previous literature and was further developed from the emerging data (Tuckett, 2005). Following this initial coding the various codes were then grouped into broader themes. Following the coding by the first researcher, a second researcher then checked the codes against the data to ensure credibility and trustworthiness (Quinn-Patton, 2002). This second researcher helped ‘define and refine’ (Braun & Clarke, 2006) the themes; they suggested slight changes in code or theme names to more accurately describe and reflect the data. This defining and refining continued as they also read through the written detailed analysis of the first researcher, making subtle improvements to the themes and the ‘story’ they tell. All main themes and sub-themes are summarised in Table 2.
Findings From the analysis, four main categories emerged along with seven sub-themes (Table 2). All of the participants noted that there was little access to information or support about foodrelated activities.
Direct food-related information The services identified in this category are those which can be described as directly foodrelated. These are written materials on food-related issues, training on food-related issues and the provision of lunch clubs. Written materials. Most participants were unaware that specific written information on dementia and food care was available and expressed disappointment regarding the limited amount of food-related information provided to them:
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Table 2. Results of thematic analysis. Main themes
Sub-themes
Direct food-related information Direct food-related support services (informal) Indirect food-related support services (formal) No services required
Food-related materials Training Lunch clubs Respite services Domestic help at home Confidence in managing food-related processes No change in dementia progression and food responsibilities
I do worry over Lily. I don’t like Lily getting too thin. I’m a bit surprised that no one has spoken to us about nutrition and food. I don’t think they do that much with leaflets and I certainly have not received anything. (George)
They believed it would be beneficial to receive written information in this area, such as booklets, and they were keen to receive information about dementia progression and the capacity to manage food processes. The main topics of interest were nutritional information on dementia, weight loss, change in appetite or taste and problematic behaviour. One woman caring for her husband noted the absence of the provision of information on nutrition and dementia: A lady from the Alzheimer’s Society visited and there were so many questions I wanted to ask her but she was really here for her purposes and me filling in these forms: things for what we can claim for. I wanted to information about what kinds of food to avoid and that side of things. They do have a kitchen at the Alzheimer’s Society but I do not know if they have any guidelines to help caregivers. I don’t know anything about that side of it but I’ve always been interested in diet. (Betty)
Training. Some participants had never received training on how to cope with the care recipients’ decline in their ability to manage food activities. They felt that they learnt and adapted through day-to-day events and their own experiences. Participants said that they were offered cookery lessons on hygiene and preparation; however, this was not directly related to dementia: We could do with getting information on people with dementia and food . . . We had nothing specific given to us so far. A person came and spoke about the five fruits and vegetables for the day but she did not actually give us any information on anything we should be doing different in regards to dementia and food. We have nobody telling us what might happen. Hoping we do things the right way. (Tricia)
As with written materials, many informal caregivers wanted to learn about nutritional information; how food affected the brain and what type of food could prevent or delay memory loss. Participants were interested to know if food made a difference to the illness itself, for example, if oily fish improves memory and if it is beneficial for the carerecipient.
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Direct food-related approach Informal support services Lunch clubs. Some participants mentioned the difficulties in managing food preparation and eating. Caregivers found it quite isolating learning techniques to cope on their own on a day-to-day basis as they had no outside resources guiding them. Therefore, they felt it would be helpful to talk to others who had experience in this area. The AS arranged events that enabled informal caregivers and people with dementia to socialise with others in the same situation. These events would take the form of cafe´s and lunches held in church halls or community centres. These social events were opportunities to share concerns and experiences with others who understood as well as a chance for them to have fun. Participants spoke of the benefits of discussing food care with others: We’ve been going to the Alzheimer’s Society group for a while now and that helps because you’re meeting people in the same predicament. They have this cafe´ every month, you meet people, and you hear different stories. My wife is still in early stages but the person that was sitting beside us with his mother, who was well advanced, but he took it in his stride. It helps a lot to see this and it reduces the worry that I won’t be able to cope. (Sid)
Indirect food-related approach Formal support services. The interventions identified in this category are those which indirectly contribute to the carers’ ability to prepare food for the person with dementia. The provision of respite services and domestic home help would ease the burden on the informal carer and so enable them to focus more on food-related activities. Respite services. Some participants wanted to be on their own in the house to organise and prepare meals without the person with dementia being there. They found it difficult to find services that would look after the care-recipient so the caregiver could have respite in their own home. This participant’s quote demonstrates how respite in the home can be beneficial for food care organisation: What I would love is for him to go to a day centre just once a week. Because I can go out on my own but I never have the house for myself. All of a sudden, everything literally has fallen on me, sorting out the house, preparing, cooking and sorting out the finances. So that’s been a difficult side of the changing roles. (Mary)
Domestic help at home. Some caregivers would prefer domestic help in the home rather than food-related social events. For example, in relation to food preparation, one caregiver said: You can do with more help at home, I find. They are more interested for you to go to lunch clubs but I could do with more help at home with the washing up! I would rather have someone come to me but they do not seem to bother with that end of things. (Rita)
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No services required Two reasons were proffered for not wanting an intervention: confidence in managing foodrelated processes and no change in dementia progression and food responsibility. Confidence in managing food-related processes. Some caregivers felt that food information and support services were not needed, believing that they were already aware of how to manage dementia progression and food care, e.g. knowing about healthy eating, and expressed confidence that they were coping well in this area. They thought that there would be no benefit in receiving information on food materials or food support services No I have not received advice because I am largely sorted I think. It goes back to what I said that my wife was experienced, skilful and we eat mainly on the Mediterranean diet. I prepare the menu a week in advance to try to ensure we have a variety of food. So, I haven’t felt it necessary to call in for help or information. I don’t feel that I need professional advice. (Duncan)
No change in dementia progression and food responsibility. These participants felt that because the care-recipient was still at an early stage and so there were no difficulties experienced in managing food-related care. A participant explained that their routine had not changed since her sister was diagnosed with dementia: Well you see I haven’t had to get much information because I haven’t had to change much with our everyday habits. I think food is important but with my sister, we are coping very well because she is not advanced. So at this stage we are managing well and I haven’t had to seek any advice. (Ana)
Nevertheless, these caregivers believed that such support would be important for other informal caregivers, especially if they had eating difficulties, such as with appetite or weight loss. Nor were the caregivers in this category necessarily saying that they would not, at some stage, require such information I expect if I ask I would get them but it has not been necessary because she still eats what she has always eaten. I will probably get the information from the Alzheimer’s Society; I’m not sure the GP practices would have much on that specifically. (Jeff)
Discussion From the narratives, four main themes along with seven sub-themes emerged. These were: direct food-related information (written material, and training), direct food-related informal support services (lunch clubs), indirect food-related formal support services (respite care and help in the home) and no services required (because of confidence in managing food-related processes and no change in dementia progression and food responsibility). All participants from this study agreed that food-related care is an important area in dementia care, even if they did not need support at that moment in time. Winterfeldt (2001) have previously
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concluded that there is inadequate nutrition education and other nutrition services for caregivers for people with dementia and the findings reported upon in this paper provide further evidence for this assertion. The majority of caregivers in this study believe that there is a lack of awareness and availability of certain food-related interventions. The services highlighted by the participants were, food-related written material, training and nutritional information in both these areas. Most of the participants were interested in receiving social support and educational services and most caregivers emphasised that information and support services need to be made more accessible to improve food-related care. Participants raised their concerns about poor nutrition and the provision of written material and support in this area. Targeted services can benefit caregivers and the person with dementia, reducing burden and increasing coping skills but in the specific area of food (Salin et al., 2009; Robinson et al., 2009). Many caregivers had difficulties coping with the person with dementia in the areas of food preparation and consumption. They found it isolating with few outside resources to assist them. The social events that were available were mostly organised by the AS, e.g. lunch clubs, AS cafes. These types of events increase caregivers’ and care recipients’ confidence as they were able to learn and support one another in a non-judgemental environment. Participants in this study identified benefits, such as feeling comfortable among others in the same situation, sharing concerns and experiences, which echoes findings from the previous studies of Mather (2006) and William et al. (2001). Being with other dementia caregivers in a social environment has emotional benefits, such as decreasing isolation and feelings of uncertainty. It is perceived to complement rather than replace informal caregiving, reduce caregivers’ burden, improve their coping skills and motivate them for positive care giving (Mittelman et al., 2004). By receiving social support, caregivers’ coping skills may develop more quickly, thereby reducing burden and providing them and their care-recipient better overall satisfaction with life. However, some participants in this study wanted support, via respite services and help at home, which would free up their time and so enable them to focus on food-related activities. One way of interpreting this finding is to refer to the work of Miller et al. (2001) and Brodaty and Donkin (2009). They distinguish between instrumental support and emotional support. Emotional support is social support from their peers, i.e. people experiencing a similar situation to them while instrumental support refers to more practical support. Clearly, some of the participants perceived themselves to be in need of the latter rather than the former. There were some caregivers who felt food-related services were not needed. These participants thought it unnecessary to receive outside help as they felt in control of the situation with regard to food-related activities. The limitation of this study is that the sample is small and therefore it is difficult to generalise from the findings. Further, larger scale research could explore how and the extent to which services relieve the burden of care on informal care givers; the effectiveness of the various interventions and the extent to which there is a correlation between stages of dementia and need for a particular service.
Practical implications All participants agreed that the issue of food was important and there was little access to information or support. The findings suggest that different caregivers have different needs
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and that these needs, in terms of education and social support, change over time. It follows that the needs of individual caregivers should be assessed over time to ensure that the necessary information and support is available at the appropriate time (Salin et al., 2009). Health practitioners, such as GPs, should ensure that that this assessment takes place and make sure that caregivers are given the necessary information about the education and support services available. In this way caregivers can be more effectively supported to manage dementia progression in food-related care and their burden reduced.
Conclusion This study is the first to explore dementia and food-related social support and education needs and availability from the perspective of caregivers. The narratives of caregivers suggest that there are five different areas where services can be implemented to aid caregivers to cope better and reduce burden. These were through written material, training, lunch clubs, respite services and domestic help at home. In addition, there were participants who felt that services were not needed due to being confident in managing foodrelated processes and experiencing no change in dementia progression and food responsibility. Facilitating access to support and education, at the appropriate time, will reduce the caregivers’ burden in food-related care. A further, longitudinal study could investigate further the extent to which support and education needs change over time. These targeted services can benefit caregivers and the person with dementia as studies have indicated that they reduce burden, increase coping skills and quality of life. As dementia increases, caregivers seek more education and social support, and therefore the timing of receiving these services is important to prepare caregivers in advance and to prevent negative outcomes occurring later. Acknowledgment The authors acknowledge University of Surrey, the Alzheimer’s Society and the family members of people with dementia who participated in this study.
Funding The author received no financial support for the research, authorship and/or publication of this article.
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Dr Iliatha Papachristou is a research associate at the Department of Applied Health Research, at the University College of London. Iliatha is a chartered health psychologist with a PhD in dementia, food-related management. She has worked in mental health with the South London and Maudsley Hospital for several years, focusing much of her work with older adults. She is currently working on qualitative methodological elements of health applied research. This includes areas such as, stroke care and ear, nose and throat. Dr Gary Hickey is the Public and Patient Involvement Lead for Research and Education, at the Centre for Public Engagement in the Faculty of Health, Social Care and Education at Kingston University and St George’s, University of London. Gary has gained over a decade of experience working in health and social care research, including public and patient involvement, and over a decade’s experience working in research and project management, both in the UK and overseas, on ethics and corruption. Prof. Steve Iliffe was a general practitioner in inner London for 30 years, and was the first Professor of Primary Care for Older People in the UK. His research interests include mental health in later life, and he was the chief investigator on the Evidence-based Interventions in Dementia programme (EVIDEM), funded by the National Institute of Health Research (2007–13). He was also associate director of the national Dementias and Neurodegenerative Diseases Research Network (DENDRON) for 2006 to 2015.
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Article
Dementia informal caregiver obtaining and engaging in food-related information and support services
Dementia 0(0) 1–11 ! The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301215583148 dem.sagepub.com
Iliatha Papachristou Department of Applied Health Research, UCL, UK
Gary Hickey Centre for Public Engagement, Kingston University and SGUL, UK
Steve Iliffe Department of Primary Care & Population Health, UCL, UK
Abstract As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers’ perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers’ experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. ‘Direct food-related Information’, covers written material, training, ‘Direct food-related informal support’: lunch clubs, ‘Indirect non-food related formal support services’ covers respite services and domestic help at home. Finally ‘no services required’ covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs. Keywords dementia, food-related services, caregiving, social support, education and information, informal carer
Corresponding author: Iliatha Papachristou, Department of Applied Health Research, UCL, 1–19 Torrington Place, London WC1E 7HB, UK. Email: [email protected]
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Introduction Informal caregivers are defined as people caring for a family member, friend or neighbour (Bass et al., 2013). There are a number of services for informal dementia caregivers that have been designed to decrease negative outcomes for the caregiver, for example depression and anxiety, and improve positive outcomes such as self-esteem and competence (Pinquart & Sorenton, 2006; Nelis, Quinn, & Clare, 2007; Parker, Mills, & Abbey, 2008). Services such as respite-care or day centres for people with dementia allow caregivers to recharge and experience temporary relief for a short period of time (Salin, Kaunonen, & Astedt-Kurki, 2009; Robinson, Buckwalter, & Reed, 2013). There are social support services, such as health professionals informing carers of ways of how to adapt to difficult situations in the form of training, by providing written information or through peer support activities, such as organised social events (Pinquart & Sorenton, 2006). All these help the carer to continue assisting the person with dementia at home, by providing them with respite and/or by enabling them to develop better coping skills (Gaugler et al., 2003). There are also educational services, such as training and the provision of written information. Information and support services in the food-related domain are increasingly being brought to the foreground, particularly within policy agendas (Winterfeldt, 2001). Foodrelated behaviours, such as difficult mealtime behaviour, create stress for the caregiver particularly if they are depressed and socially isolated and without any support (Rivie`re, Gillette-Guyonnet, & Voisin, 2001). Furthermore, as dementia progresses, caregivers’ responsibilities in food-related processes increase. Caregivers often manage the decline of food-related abilities on their own and with minimum support (Manthorpe & Watson, 2003). These caregivers may experience burden because they do not have the necessary coping skills or knowledge (Brodaty & Donkin, 2009). Therefore, providing updated information and social support can be beneficial, as they act as a mediator that decreases burden (Miller et al., 2001). There are some food-related support services available. A service offered to people with dementia, that caregivers find useful, is Meals-on-Wheels (cooked or frozen meals delivered to their home) (Reynish, Andrieu, Nourhashemi, & Vella, 2001). In the UK, the Alzheimer’s Society (AS) run a cafe´ designed to enable caregivers and the recipients of care to relax in an informal atmosphere with others in a similar situation (Halley, Boulton, Mcfadzean, & Moriarty, 2005). This is valued by people caring for someone who is less able to sit down in a conventional restaurant or cafe´ for any length of time (Keller et al., 2008). The provision of social support, such as lunch or cafe´ clubs for people with dementia also gives informal caregivers an opportunity for respite (Mather, 2006). A review by Manthorpe and Watson (2003) indicated that food-related support services have had a positive impact on the dementia caregiver and their care-recipients as they decrease distress, increase enjoyment and positive care (Winterfeldt, 2001). In addition, those people with dementia who attend lunch or cafe´ clubs are less likely to need help eating meals than non-attendees (Williams, Dearden & Camaron, 2001). Keller et al. (2008) assert that the lack of accessibility and provision of food-related information to caregivers should be investigated, while Papachristou, Giatras, and Ussher (2013) argue that the required types of food-related support intervention should be identified. The research reported here is part of a broader study which aimed to investigate the impact of dementia progression on food-related activities, i.e. with shopping, preparation and eating (Papachristou et al., 2013) from the perspective of the
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informal carer. The study is the first to explore informal caregivers’ perspectives of dementia food-related information and support services in terms of their experiences and needs.
Aims The aim of this paper is to investigate informal caregivers’ experiences of, and views on, food-related information and support services in dementia.
Methods Participants The participants were 20 informal caregivers (family, friends or neighbours) looking after people with dementia at home (Table 1). All of the caregivers manage the food-related activities of the care recipients. Data were collected via semi-structured, face-to-face interviews with each of the 20 caregivers. All the interviews took place in the caregiver’s home or in a private room in a public library during an 8-week period, with the interviews lasting 20 to 30 minutes.
Recruitment Participants were recruited by advertising, via leaflets and posters, in a local chemist, a community centre, and a national charity (AS) in South West London. In addition, some participants were recruited by the snowballing technique (Ritchie, Lewis, McNaughton, & Ormston, 2014); health care professionals working with dementia and older adults were also Table 1. Demographics of participants and stage of dementia. Pseudonym name of caregiver
Relationship to recipient
Severe/moderate/mild
Maggie Jeff Ana Tammy Wendy Duncan Rita Dave Mary Betty Fran Andrew Sid Danny Henry Patrick Robert Juliet George Trisha
Friend Son Sister Wife Wife Husband Wife Son Wife Wife Wife Husband Husband Son Husband Son Husband Sister Husband Wife
Severe Moderate Mild Moderate Moderate Moderate Moderate Moderate Moderate Moderate Moderate Mild Mild Severe Moderate Severe Moderate Moderate Severe Severe
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contacted and asked to recommend potential participants. Those providing contact details were telephoned to further explain the study and to arrange an interview. Written informed consent was obtained from each carer and, if possible, from the person with dementia. Before the interview, an information sheet and consent form were posted to the participants. People with dementia, who had the capacity to understand and be informed about the study, were also sent an information sheet and a form to consent to their caregiver being interviewed. Capacity to give consent was ascertained by their caregiver. If the person with dementia lacked the capacity to give consent, the informal caregiver acted in his or her best interest. Ethical approval was granted by the University of Surrey Ethics Committee. All participants were given pseudonyms. These are shown in table along with demographic characteristics. Participants were asked questions about their experiences of (1) obtaining information about food and dementia; (2) if they received professional help and advice in this area and (3) what food-related services they would find beneficial.
Data analysis All interviews were recorded and transcribed verbatim. Each of the transcripts were then thematically analysed by a researcher so that themes or patterns were identified from each participant independently, broadly using the approach outlined by Braun and Clarke (2006). The researcher used both an inductive and deductive approach. An analytical framework was derived from previous literature and was further developed from the emerging data (Tuckett, 2005). Following this initial coding the various codes were then grouped into broader themes. Following the coding by the first researcher, a second researcher then checked the codes against the data to ensure credibility and trustworthiness (Quinn-Patton, 2002). This second researcher helped ‘define and refine’ (Braun & Clarke, 2006) the themes; they suggested slight changes in code or theme names to more accurately describe and reflect the data. This defining and refining continued as they also read through the written detailed analysis of the first researcher, making subtle improvements to the themes and the ‘story’ they tell. All main themes and sub-themes are summarised in Table 2.
Findings From the analysis, four main categories emerged along with seven sub-themes (Table 2). All of the participants noted that there was little access to information or support about foodrelated activities.
Direct food-related information The services identified in this category are those which can be described as directly foodrelated. These are written materials on food-related issues, training on food-related issues and the provision of lunch clubs. Written materials. Most participants were unaware that specific written information on dementia and food care was available and expressed disappointment regarding the limited amount of food-related information provided to them:
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Table 2. Results of thematic analysis. Main themes
Sub-themes
Direct food-related information Direct food-related support services (informal) Indirect food-related support services (formal) No services required
Food-related materials Training Lunch clubs Respite services Domestic help at home Confidence in managing food-related processes No change in dementia progression and food responsibilities
I do worry over Lily. I don’t like Lily getting too thin. I’m a bit surprised that no one has spoken to us about nutrition and food. I don’t think they do that much with leaflets and I certainly have not received anything. (George)
They believed it would be beneficial to receive written information in this area, such as booklets, and they were keen to receive information about dementia progression and the capacity to manage food processes. The main topics of interest were nutritional information on dementia, weight loss, change in appetite or taste and problematic behaviour. One woman caring for her husband noted the absence of the provision of information on nutrition and dementia: A lady from the Alzheimer’s Society visited and there were so many questions I wanted to ask her but she was really here for her purposes and me filling in these forms: things for what we can claim for. I wanted to information about what kinds of food to avoid and that side of things. They do have a kitchen at the Alzheimer’s Society but I do not know if they have any guidelines to help caregivers. I don’t know anything about that side of it but I’ve always been interested in diet. (Betty)
Training. Some participants had never received training on how to cope with the care recipients’ decline in their ability to manage food activities. They felt that they learnt and adapted through day-to-day events and their own experiences. Participants said that they were offered cookery lessons on hygiene and preparation; however, this was not directly related to dementia: We could do with getting information on people with dementia and food . . . We had nothing specific given to us so far. A person came and spoke about the five fruits and vegetables for the day but she did not actually give us any information on anything we should be doing different in regards to dementia and food. We have nobody telling us what might happen. Hoping we do things the right way. (Tricia)
As with written materials, many informal caregivers wanted to learn about nutritional information; how food affected the brain and what type of food could prevent or delay memory loss. Participants were interested to know if food made a difference to the illness itself, for example, if oily fish improves memory and if it is beneficial for the carerecipient.
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Direct food-related approach Informal support services Lunch clubs. Some participants mentioned the difficulties in managing food preparation and eating. Caregivers found it quite isolating learning techniques to cope on their own on a day-to-day basis as they had no outside resources guiding them. Therefore, they felt it would be helpful to talk to others who had experience in this area. The AS arranged events that enabled informal caregivers and people with dementia to socialise with others in the same situation. These events would take the form of cafe´s and lunches held in church halls or community centres. These social events were opportunities to share concerns and experiences with others who understood as well as a chance for them to have fun. Participants spoke of the benefits of discussing food care with others: We’ve been going to the Alzheimer’s Society group for a while now and that helps because you’re meeting people in the same predicament. They have this cafe´ every month, you meet people, and you hear different stories. My wife is still in early stages but the person that was sitting beside us with his mother, who was well advanced, but he took it in his stride. It helps a lot to see this and it reduces the worry that I won’t be able to cope. (Sid)
Indirect food-related approach Formal support services. The interventions identified in this category are those which indirectly contribute to the carers’ ability to prepare food for the person with dementia. The provision of respite services and domestic home help would ease the burden on the informal carer and so enable them to focus more on food-related activities. Respite services. Some participants wanted to be on their own in the house to organise and prepare meals without the person with dementia being there. They found it difficult to find services that would look after the care-recipient so the caregiver could have respite in their own home. This participant’s quote demonstrates how respite in the home can be beneficial for food care organisation: What I would love is for him to go to a day centre just once a week. Because I can go out on my own but I never have the house for myself. All of a sudden, everything literally has fallen on me, sorting out the house, preparing, cooking and sorting out the finances. So that’s been a difficult side of the changing roles. (Mary)
Domestic help at home. Some caregivers would prefer domestic help in the home rather than food-related social events. For example, in relation to food preparation, one caregiver said: You can do with more help at home, I find. They are more interested for you to go to lunch clubs but I could do with more help at home with the washing up! I would rather have someone come to me but they do not seem to bother with that end of things. (Rita)
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No services required Two reasons were proffered for not wanting an intervention: confidence in managing foodrelated processes and no change in dementia progression and food responsibility. Confidence in managing food-related processes. Some caregivers felt that food information and support services were not needed, believing that they were already aware of how to manage dementia progression and food care, e.g. knowing about healthy eating, and expressed confidence that they were coping well in this area. They thought that there would be no benefit in receiving information on food materials or food support services No I have not received advice because I am largely sorted I think. It goes back to what I said that my wife was experienced, skilful and we eat mainly on the Mediterranean diet. I prepare the menu a week in advance to try to ensure we have a variety of food. So, I haven’t felt it necessary to call in for help or information. I don’t feel that I need professional advice. (Duncan)
No change in dementia progression and food responsibility. These participants felt that because the care-recipient was still at an early stage and so there were no difficulties experienced in managing food-related care. A participant explained that their routine had not changed since her sister was diagnosed with dementia: Well you see I haven’t had to get much information because I haven’t had to change much with our everyday habits. I think food is important but with my sister, we are coping very well because she is not advanced. So at this stage we are managing well and I haven’t had to seek any advice. (Ana)
Nevertheless, these caregivers believed that such support would be important for other informal caregivers, especially if they had eating difficulties, such as with appetite or weight loss. Nor were the caregivers in this category necessarily saying that they would not, at some stage, require such information I expect if I ask I would get them but it has not been necessary because she still eats what she has always eaten. I will probably get the information from the Alzheimer’s Society; I’m not sure the GP practices would have much on that specifically. (Jeff)
Discussion From the narratives, four main themes along with seven sub-themes emerged. These were: direct food-related information (written material, and training), direct food-related informal support services (lunch clubs), indirect food-related formal support services (respite care and help in the home) and no services required (because of confidence in managing food-related processes and no change in dementia progression and food responsibility). All participants from this study agreed that food-related care is an important area in dementia care, even if they did not need support at that moment in time. Winterfeldt (2001) have previously
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concluded that there is inadequate nutrition education and other nutrition services for caregivers for people with dementia and the findings reported upon in this paper provide further evidence for this assertion. The majority of caregivers in this study believe that there is a lack of awareness and availability of certain food-related interventions. The services highlighted by the participants were, food-related written material, training and nutritional information in both these areas. Most of the participants were interested in receiving social support and educational services and most caregivers emphasised that information and support services need to be made more accessible to improve food-related care. Participants raised their concerns about poor nutrition and the provision of written material and support in this area. Targeted services can benefit caregivers and the person with dementia, reducing burden and increasing coping skills but in the specific area of food (Salin et al., 2009; Robinson et al., 2009). Many caregivers had difficulties coping with the person with dementia in the areas of food preparation and consumption. They found it isolating with few outside resources to assist them. The social events that were available were mostly organised by the AS, e.g. lunch clubs, AS cafes. These types of events increase caregivers’ and care recipients’ confidence as they were able to learn and support one another in a non-judgemental environment. Participants in this study identified benefits, such as feeling comfortable among others in the same situation, sharing concerns and experiences, which echoes findings from the previous studies of Mather (2006) and William et al. (2001). Being with other dementia caregivers in a social environment has emotional benefits, such as decreasing isolation and feelings of uncertainty. It is perceived to complement rather than replace informal caregiving, reduce caregivers’ burden, improve their coping skills and motivate them for positive care giving (Mittelman et al., 2004). By receiving social support, caregivers’ coping skills may develop more quickly, thereby reducing burden and providing them and their care-recipient better overall satisfaction with life. However, some participants in this study wanted support, via respite services and help at home, which would free up their time and so enable them to focus on food-related activities. One way of interpreting this finding is to refer to the work of Miller et al. (2001) and Brodaty and Donkin (2009). They distinguish between instrumental support and emotional support. Emotional support is social support from their peers, i.e. people experiencing a similar situation to them while instrumental support refers to more practical support. Clearly, some of the participants perceived themselves to be in need of the latter rather than the former. There were some caregivers who felt food-related services were not needed. These participants thought it unnecessary to receive outside help as they felt in control of the situation with regard to food-related activities. The limitation of this study is that the sample is small and therefore it is difficult to generalise from the findings. Further, larger scale research could explore how and the extent to which services relieve the burden of care on informal care givers; the effectiveness of the various interventions and the extent to which there is a correlation between stages of dementia and need for a particular service.
Practical implications All participants agreed that the issue of food was important and there was little access to information or support. The findings suggest that different caregivers have different needs
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and that these needs, in terms of education and social support, change over time. It follows that the needs of individual caregivers should be assessed over time to ensure that the necessary information and support is available at the appropriate time (Salin et al., 2009). Health practitioners, such as GPs, should ensure that that this assessment takes place and make sure that caregivers are given the necessary information about the education and support services available. In this way caregivers can be more effectively supported to manage dementia progression in food-related care and their burden reduced.
Conclusion This study is the first to explore dementia and food-related social support and education needs and availability from the perspective of caregivers. The narratives of caregivers suggest that there are five different areas where services can be implemented to aid caregivers to cope better and reduce burden. These were through written material, training, lunch clubs, respite services and domestic help at home. In addition, there were participants who felt that services were not needed due to being confident in managing foodrelated processes and experiencing no change in dementia progression and food responsibility. Facilitating access to support and education, at the appropriate time, will reduce the caregivers’ burden in food-related care. A further, longitudinal study could investigate further the extent to which support and education needs change over time. These targeted services can benefit caregivers and the person with dementia as studies have indicated that they reduce burden, increase coping skills and quality of life. As dementia increases, caregivers seek more education and social support, and therefore the timing of receiving these services is important to prepare caregivers in advance and to prevent negative outcomes occurring later. Acknowledgment The authors acknowledge University of Surrey, the Alzheimer’s Society and the family members of people with dementia who participated in this study.
Funding The author received no financial support for the research, authorship and/or publication of this article.
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Dr Iliatha Papachristou is a research associate at the Department of Applied Health Research, at the University College of London. Iliatha is a chartered health psychologist with a PhD in dementia, food-related management. She has worked in mental health with the South London and Maudsley Hospital for several years, focusing much of her work with older adults. She is currently working on qualitative methodological elements of health applied research. This includes areas such as, stroke care and ear, nose and throat. Dr Gary Hickey is the Public and Patient Involvement Lead for Research and Education, at the Centre for Public Engagement in the Faculty of Health, Social Care and Education at Kingston University and St George’s, University of London. Gary has gained over a decade of experience working in health and social care research, including public and patient involvement, and over a decade’s experience working in research and project management, both in the UK and overseas, on ethics and corruption. Prof. Steve Iliffe was a general practitioner in inner London for 30 years, and was the first Professor of Primary Care for Older People in the UK. His research interests include mental health in later life, and he was the chief investigator on the Evidence-based Interventions in Dementia programme (EVIDEM), funded by the National Institute of Health Research (2007–13). He was also associate director of the national Dementias and Neurodegenerative Diseases Research Network (DENDRON) for 2006 to 2015.
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