Involving Caregivers of People With Dementia to Validate Booklets on Food-Related Activities: A Qualitative Think-Aloud Study

Abstract

This study is the first to explore informal dementia caregivers’ perceptions and outlook on written materials about all food-related processes: shopping, food preparation, and eating. The aim of the study was to develop and evaluate the content, format, and usefulness of two separate booklets (one newly developed and one existing) on food-related processes. Twenty dementia caregivers were provided with one of the two booklets, and a Think-Aloud method was used to gather information about their views on the booklets. The findings indicated that incorporating all three food processes in a new booklet could be beneficial for the participant. Shopping, purchasing food, driving, and dangers in the kitchen were addressed only in the developed booklet, and participants regarded them as important and useful areas to address. Therefore, this study has shown that tailored information may enhance caregivers’ confidence and support them in making decisions to help them adapt to food-related changes.

Keywords

dementia informal caregiving food-related processes written information qualitative methodology

Introduction

People with dementia become increasingly dependent on others to assist them with everyday activities (Sami & Manthorpe, 2013). Previous research has highlighted the impact of cognitive decline and behavioral difficulties on everyday activities of a person with dementia and the consequences this has on their caregiver (Lopez et al, 2003; Papastavroue, Kalokerinou, Papacostas, Tsangari, & Sourtzim, 2007; Pinquart & Sorensen, 2007; Prince, Albanese, Guerchet, & Prina, 2014). Dementia affects food-related processes, meaning food shopping, food preparation, and eating (Papachristou, Giatras, & Ussher, 2013). The inability to maintain a healthy diet and to eat well causes severe health risks, such as weight loss and malnutrition. This area of care can create stress and anxiety for both people with dementia and their caregivers (Bilotta, Bergamaschini, Arienti, Spreafico, & Vergani, 2010; Holm & Söderhamn, 2003; Papachristou et al., 2013, Keller et al, 2015). In particular, apathy and depression are common causes and source of caregiver stress (Livingston & Frankish, 2015; Vitaliano, Zhang, & Scanlan, 2003).

There have been studies that examined progressive decline in function between dementia caregivers and their care-recipients and how this affected basic activities of daily living (BADL) and instrumental activities of daily living (IADL) (Ory et al., 1999; Østbye et al., 1999; Small, Geldart, & Gutman, 2000). Overall, the majority of these studies found a high percentage of dependence on dementia caregivers in grocery shopping, meal preparation, housework, transportation, finances, and eating. These studies have demonstrated that one of the main ADL that affects greatly the person with dementia and the informal caregiver is food-related processes.

Eating habits of people with dementia may change as the condition progresses. For example, people with dementia may prefer to eat sweets rather than nutritious food or may refuse to eat altogether (Ikeda, 2002; Riviere et al., 2001). Weight loss may happen due to eating issues, such as difficulties using utensils or forgetting to eat (Morris & Volicer, 2001). Cognitive decline results in a decrease of motivation, appetite, and food intake, and leads to malnutrition and frailty (Navratilova et al., 2007). Furthermore, weight loss and malnutrition have been associated with institutionalization and increased mortality (Andrieu et al., 2001). In turn, these developments affect the caregiver who has to cope with these changes.

According to Keller et al (2010), the nutritional status of a person with dementia can be improved with the appropriate interventions. However, limited interventions have been developed and are mostly based in institutions with formal caregivers (Watson & Green, 2006). Even fewer interventions have focused on informal caregivers and people with dementia living at home (Francis, Taylor, & Strickland, 2004; Isaia et al., 2011; Manthorpe & Watson, 2003). Studies that have included informal caregivers and investigated food-related processes focused mainly on exploring spouse relationships and gender differences (Atta-Konadu, Keller, & Daly, 2011; Fjellström et al., 2010). These studies examined the whole food-related process of care to discover changes in adapting to dementia progression and abilities to manage food shopping, preparation of food, and the eating of food. Fjellström et al. (2010) investigated the transitional experience of a caregiver taking on a new role that is best suited to them and the person with dementia while maintaining the best quality of care in regard to food-related processes.

A qualitative study by Papachristou et al. (2013) explored the perspectives of 20 family dementia caregivers on food-related processes of people with dementia. The findings showed that there was a pattern of decline with regard to daily functioning in food-related processes for the people with dementia. Food shopping was the first ability to decline, followed by food preparation and finally on the ability to eat. Caregivers had to adapt to this decline in abilities, and they described this adaptation as stressful yet satisfying as food-related processes were seen as an important social time. In addition, these caregivers regarded food-related processes as an important area in daily living. However, respondents also emphasized that there is little access to food-related information or support services, leading to feelings of isolation (Papachristou et al., 2013; Papachristou et al., 2015).

One means of providing information on food-related processes to caregivers is via printed materials. Hard copy print resources have been identified as a preferred method to deliver information on dementia and management of food-related processes to informal caregivers (Keller et al., 2008). Providing food-related booklets to dementia caregivers can be economical, beneficial, and effective in helping them cope with and adapt to changes in their lives as long as they are appropriately written for lay readers (Done & Thomas, 2001).

An audit of written material on dementia care and food-related processes identified 13 publications (Papachristou, 2014). A thematic analysis of these materials identified five main themes: changes in appetite, changes in food preparation, methods of eating, eating out, and dental care and swallowing difficulties. Only one booklet, the Alzheimer Society’s Food for Thought, covered all five themes. The audit did not include food-related process of shopping and a limited amount of information was provided on the process of food preparation. This emphasizes the gap of information available to caregivers: that is, food-related process of shopping and preparation information. This supports previous findings by Papachristou et al. (2013) and therefore indicated a need for further investigation.

The research reported upon here sought to assess the content, format, and usefulness of two booklets, which covered the food-related processes of shopping, food preparation, and eating. The intention is to use the findings to inform the development of a booklet which could be used to assist informal caregivers. A Think-Aloud methodology was used to collect data from informal caregivers. This approach is widely used in psychology and generally used for verbalizing what a person is thinking while attempting to solve a problem (Ericsson & Simon, 1993). Think-Aloud involves respondents providing instant feedback and reflection on the information provided to them (in this case written material), enabling an evaluation of their thought process (Carr, 1998). Think-Aloud has been previously used with health community dwelling seniors (Jobe & Mingay, 1990, Nyman & Yardley, 2009).) and with older adults to get views on a website focusing on falls prevention (Luger et al., 2014).

Aim

The aim is to develop and assess the content, format, and usefulness of two booklets (one newly developed and one existing) from the perspectives of caregivers of people with dementia.

Method

Study Design

The study involved two phases. Phase 1 was the development of a booklet (Booklet 2) which incorporated the main themes identified from the audit by Papachristou (2014) and key findings found from the Papachristou et al. (2013) study. Phase 2 was a qualitative study that used a Think-Aloud method to compare two booklets: Booklet 1 (existing booklet) and Booklet 2 (newly developed booklet).

Booklet 1, titled Food for Thought, was produced and distributed by the Alzheimer’s Society (a U.K. dementia charity) and is currently accessible for informal caregivers of people with dementia with a total length of 18 pages. This booklet was selected for this study because it covers all five main areas identified from a previous audit study of booklets on dementia care and food-related processes (Papachristou, 2014): (a) changes in appetite, (b) changes in food preparation, (c) methods of eating, (d) eating out, and (e) dental care and swallowing difficulties. It is worth noting that the booklet does not cover the food-related process of shopping and has limited information of the process of food preparation, such as the decline in a person with dementia’s ability to cook, safety in the kitchen, and caregivers adapting to these changes.

Phase 1—The development of Booklet 2

Booklet 2 was developed using findings from a previous study (Papachristou et al., 2013), which identified, from the perspective of caregivers, key food-related issues. The information in Booklet 2 contained information on all three food-related processes (shopping, preparation, and eating). In addition, quotes of informal caregivers were taken from the results in the Papachristou et al. (2013) study and were used in Booklet 2 to provide a personal account of how caregivers experience specific situations in dementia progression and manage with food-related processes. The total length of this booklet was 35 pages. The booklet was evaluated by an expert panel for content validity. This panel consisted of a nutritionist, health psychologist, and a dementia caregiver representative. The booklet was revised 2 times before consensus was reached on the content. Table 1 provides a comparison of the information contained in the two booklets.

Table 1.

Comparison of Booklet Content.

	Existing booklet (Booklet 1)	New booklet (Booklet 2)
Target user	For informal caregivers and people with dementia living alone	For informal caregivers who live with person with dementia and who live alone
Introduction	Two sentences introducing the booklet	Same two sentences introducing booklet as well as what the book consists of, plus index section
Structure and content	Structure of Booklet 1 A poor appetite A matter of taste Catering for change Drinks and liquids Maintaining independence Laying the table Staying safe Helping the carers Eating out A little too much? Eating behavior Healthy teeth and gums	Structure of Booklet 2 1. Shopping Going out alone and shopping; driving; purchasing food; selecting and buying food and drink 2. Preparation Laying the table; safety in Kitchen; taking on a new role in food and drink preparation; decision-making difficulties; timing menu selection; catering for change; sharing responsibility with the person you care for 3. Eating Appetite and weight change; help with choices; diet; methods of eating Drinks and liquids; helping the carers; eating out; a little too much; healthy teeth and gums
Type of food-related process	The majority of this booklet is based around eating but does discuss some elements in food preparation, such as, catering for change, laying the table and staying safe.	This booklet is specifically broken down into three sections, including shopping, preparation, and eating.
Helpful contact details	Contact details of Food for Thought project and Alzheimer’s Society	Contact details of a number of dementia and care organizations

Phase 2—Evaluating Booklets 1 and 2

Two groups of dementia caregivers were each given a different booklet, and a Think-Aloud method was used to gather information about their views on the booklets. Think-Aloud involves instant feedback and reflection on the written information provided to participants, enabling an evaluation of their thought process (Carr, 1998). A participant reading the information is required to “stop periodically, reflect on how text is being processed and understood and relate orally what reading strategies are being employed” (Baumann, Jones, & Seifert-Kessell, 1993, p. 190). The approach gives participants the opportunity to voice their opinions on whether they agree or disagree with the statements made, comment on the examples given and the helpfulness of the advice.

The advantages of Think-Aloud are that it enables the researcher to collect the data in “real time,” capturing complex processes in learning, thinking, or problem solving. The captured data are being “simultaneously lived by the participant and witnessed by the researcher” (Koro-Ljungberg, Douglas, McNeill, Therriault, & Malcolm, 2012, p. 268), drawing vivid and immediate descriptive data from the participant which is “unfiltered” and unprocessed.

The study was reviewed and accepted by University of Surrey Ethics Committee REC reference EC/2011/70/FAHS in July 2011.

Participants and Recruitment

A total of 20 participants were recruited. The eligibility criteria were that participants had to be an informal caregiver (i.e., family, friends) of people with dementia and involved in their food-related processes. The caregiver would be living with the care-recipient or caring for them while the care-recipient resided in their own home. The majority of the caregivers provided care full-time and had an average age of 70. Furthermore, the majority of participants were husbands caring for their spouses with a moderate stage of dementia (Tables 2 and 3). In addition, none of the caregivers had previously received any written information in this area. Participants were recruited through local community centers, libraries, and a local chemist, using posters and leaflets. Caregivers who showed interest in the study were provided with a letter inviting them for a one-to-one Think-Aloud session along with a consent form which was signed before the session began.

Table 2.

Demographics of Participants and Care-Recipients: Booklet 1.

Booklet 1	Pseudonym name	Relation to person with dementia	Stage of dementia	Gender of caregiver
1	Tim	Grandson	Mild	Male
2	Jean	Wife	Severe	Female
3	Peter	Son	Severe	Male
4	Maggie	Daughter	Moderate	Female
5	Fred	Husband	Severe	Male
6	Henry	Husband	Severe	Male
7	Sheila	Wife	Moderate	Female
8	Dean	Husband	Moderate	Male
9	Sam	Husband	Severe	Male
10	Andy	Husband	Severe	Male

Table 3.

Demographics of Participants and Care-Recipients: Booklet 2.

Booklet 2	Pseudonym name	Relation to person with dementia	Stage of dementia	Gender of caregiver
1	Gina	Friend	Severe	Female
2	Chris	Grandson	Moderate	Male
3	Phil	Partner	Moderate	Male
4	Kerry	Wife	Moderate	Female
5	Neil	Husband	Moderate	Male
6	Ian	Husband	Moderate	Male
7	Mary	Wife	Moderate	Female
8	Abigail	Wife	Moderate	Female
9	Ted	Husband	Severe	Male
10	Laura	Daughter	Moderate	Female

Procedure

One group of 10 participants was provided with Booklet 1 and the other group of 10 the newly written booklet (Booklet 2). The participants were randomly allocated to one of the two groups. The Think-Aloud sessions were conducted at the participants’ homes at a time convenient for them. The researcher was an experienced qualitative researcher and had previously practiced the Think-Aloud task with a colleague before recruiting participants. Each participant was briefed by the researcher on what a Think-Aloud process entailed and they were then asked to reflect by talking aloud on any thoughts that came into their mind while reading the booklet. Very general verbal instructions were given, simply to “Think-Aloud” and to verbalize “everything that passes through your head” (Banning, 2008). However, questions and prompts (e.g., “Do you have any thoughts about that?”) were used where necessary to focus the discussion. Each participant was asked to provide the researcher with a summary at the end of the Think-Aloud session, answering the questions “What are your thoughts on the layout? What are your thoughts on the length of booklet? Do you have any thoughts on the quotes?” The length of the Think-Aloud interview varied from 40 to 60 min. All interviews were audio recorded and transcribed verbatim by the researcher.

Data Analysis

The transcripts from the interviews were organized into two separate data sets using a Microsoft Excel spreadsheet; one set included the group of participants who had read Booklet 1 and the other set included those participants who read Booklet 2. The two data sets were manually coded separately in the first instance. The researcher used an inductive approach to code and analyze each data set (Braun & Clarke, 2006). The data were coded and then the codes grouped into themes. The analysis was driven by assessing the content, format, and usefulness. The two sets of coding and themes were then compared for commonalities and differences between the groups in terms of content, format, and usefulness. A second researcher then checked the codes and themes against the data to ensure credibility and trustworthiness (Patton, 2002). An iterative approach was used as the two researchers discussed any variations in the coding and gradually came to a consensus.

Findings

Table 4 shows the themes that were identified from the thematic analysis. Nine of the themes were common to both Booklets 1 and 2. The theme dental and hygiene care was identified only from analysis of responses from the participants who read Booklet 1, and five themes were identified only from analysis of responses from participants who read Booklet 2. The findings below reflect respondents’ views on the booklets themselves as well as how the booklets relate to their own experiences. The findings are reported in terms of commonalities between the two data sets, followed by differences between the two data sets. Finally, the themes have been reported in terms of how they fit with the aims of the study which was to get perspectives of caregivers on the content, format and usefulness of the booklets.

Table 4.

Main Themes From Booklet 1 and 2.

Category	Booklet 1 only	Booklet 2 only	Booklets 1 and 2
Content	Difficulties managing dental and hygiene care	Not purchasing or overstocking food items	Potential dangers in the kitchen Weight maintenance
		Enjoyable day out or shopping alone	Unable to make decisions with food choices Appetite change
		Maintaining their usual shopping routine	Helpful advice on fluid intake tips on managing eating
		Caregiver taking on the driving role	Tips when eating out
Format	NA	NA	Good presentation and personalized quotations
Usefulness	NA	Usefulness of written material	Usefulness of booklets

Commonalities Between the Booklets

Content

Potential dangers in the kitchen

Participants said that their own experiences resonated with the sections in the booklets describing care-recipients hurting themselves with kitchen appliances. They described managing potentially hazardous situations by forming strategies to maintain a safe environment: “She filled up the electric kettle and put it on the hob. I found her in a terrible state. So after that I used to switch off the electric cooker so she could not do any damage to herself” (Andy—Booklet 1).

Weight maintenance

Participants were concerned about the weight loss and thought this area was particularly important to emphasize. They commented that the tips recommended for assisting in weight maintenance were good:

The last section is on eating. My friend lost so much weight she needed cream with her meals and shakes. Nevertheless, gradually she started eating. That worries me if they are not eating. Rice pudding and porridge is good if they are not eating right and putting cream in porridge. So this book give good advice about this. (Gina—Booklet 2)

Participants discussed how they encouraged and prompted care-recipients to eat by choosing food that was familiar, presenting smaller portions, and/or cutting food to make coordination easier.

Unable to make decisions with food choices

The participants agreed with the information in the booklets that care-recipients would have difficulties making a choice of which meal to have from a menu. The caregivers would decide on their behalf or alternatively would provide two meal options so as not to overwhelm the person with dementia:

Choosing food if we were out, I would give him a choice of two dishes, fish and chips or shepherd’s pie. There is no good giving him a menu he has no clue. And because I know what he likes, I just choose it. (Mary—Booklet 2)

Appetite change

A frequently mentioned challenge was care-recipients not having an appetite; however, once food was presented, the person with dementia would often eat it:

With the food, sometimes she will say she is not hungry, so I say “that is ok you can eat it later and she will leave it there.” Then I walk out of the room and come back and she has eaten it. There is no discussion. (Maggie—Booklet 1)

Mostly, the participants maintained the same diet as before diagnosis. Many agreed though that there were changes in care-recipients’ food preferences, particularly a liking for sweet foods: “I realized they can eat sweet things all day long but not for their main meal. It must be difficult to manage refusing to eat vegetables and such and instead opt for an apple pie” (Gina—Booklet 2).

Helpful advice on fluid intake

Participants noted that the booklets mentioned drinking eight cups of fluid a day and expressed concern that eight cups may be difficult to achieve. This was because many of those with later stage of dementia suffer from incontinence, and therefore need to limit their fluid intake. Some participants found tips such as putting a glass of water by the side of the person with dementia useful:

Eight cups of fluid a day, well I don’t think Peter gets that. That is quite good using a clear glass, that is quite interesting, so you can see what is in it. I must do that about drinking, making sure peter has a glass of water by the side of him, as I am concerned that he is not drinking enough. (Abigail—Booklet 2)

Tips on managing eating

The participants agreed that it was important to give tips on how to manage mealtimes and eating behavior, such as providing smaller plate portions.

Tips when eating out

A few participants did not feel that eating out was a “welcome change to eating at home” as they would feel embarrassed about the care-recipient’s behavior, such as wandering around the restaurant. Others talked about how the care-recipient would not feel comfortable to go out, especially when surrounded by many people:

If there were too many people she would not like that. She felt out of her depth. We went with my granddaughter for her 18th birthday. I think there were 14 of us. I had to bring her home, as she felt completely overwhelmed. We used to eat out with my sister and as it was just the three of us she was fine. (Ted—Booklet 2)

Participants agreed with the advice in the booklets that it is useful to explain to others about the care-recipient’s condition if they were out, for example, in a restaurant. “Eating out, I’m with her all the time but I generally say to people what is wrong with her. She’ll try and talk to them so I’ll try and explain” (Fred—Booklet 2).

Format

Good presentation and personalized quotations

Participants discussed their first impressions of the booklets and felt that it was important to have a clear and well-presented layout. Both booklets were viewed as having a good layout; participants liked the colors and pictures. It was comforting for the participant to read quotes from other caregivers. The quotes made them feel that they were not alone in experiencing food-related difficulties. Participants felt it was encouraging to see that others had experienced similar situations to their own and that the behavior of other care-recipients was not so different from their loved ones: “It is good to know that things that she does are not that unusual and it is put in writing. I like the booklet, its good” (Maggie—Booklet 1).

Usefulness of the booklets

Caregivers reported that the booklets provided helpful guidelines. Participants thought the booklets were particularly useful for those caring with early stage dementia. However, a minority of participants caring for those with mild to moderate stages of dementia did find some examples and advice daunting as they had not experienced such late stage issues. For example, in both booklets, it was suggested that flowery table cloths should be avoided as people with dementia may try to water them. “It is helpful advice but scary as we are not quite at this stage yet. It is hard to read as I do not want to get to that stage” (Chris—Booklet 2).

Differences Between the Booklets

Booklet 1 Only

Content

Difficulties managing dental and hygiene care

The majority of the caregivers agreed with the information in the booklet that dental care and hygiene are difficult tasks to manage. Caregivers said they would have to prompt the care-recipient to brush their teeth every evening, which could result in the person with dementia becoming aggressive:

Regular cleaning of teeth is an absolute nightmare. He no longer uses an electric toothbrush. I put the paste on the brush and he says why? But it’s a nightmare. And if he doesn’t want to then a couple of times he can turn physically aggressive. (Jean—Booklet 1)

Booklet 2 Only

Content

Not purchasing or overstocking food items

Participants related to the information in the booklet, suggesting that care-recipients may not recognize the need to go and purchase food or might overstock on items previously purchased. Participants expressed concern for the care-recipient and described the care-recipient as being confused and upset: “This is for the early signs of dementia, yes that could be quite something if they are over purchasing food. They might say, I need this and I need that, but then you realize they have tons of it!” (Gina—Booklet 2).

Enjoyable day out or shopping alone

Positive and negative aspects of food shopping were discussed. Most participants regarded food shopping as a useful activity, that is, providing a trip out. Others disagreed as they would encounter difficulties with the person with dementia and therefore would prefer to shop alone: “I don’t agree that it makes a bit out of a trip for both of us, as it’s a nightmare making sure he doesn’t nick anything and also slows things down by about four times” (Neil—Booklet 2).

Maintaining their usual shopping routine

Participants mentioned that it was a relief to read that care-recipients depicted in the booklet behave similarly to the people for whom the participants care for and that to a certain extent at least, they were doing the right and “normal” thing by maintaining a routine. For example, caregivers agreed with the advice in the booklet to purchase the same items as before diagnosis: “This is true that many caregivers maintain a similar diet as before and select the same food when shopping. You do, you stick to what works!” (Abigail—Booklet 2).

Caregiver taking on the driving role

Participants agreed with the information in the booklet that care-recipients stopped driving quite early after diagnosis. Caregivers’ reflected on driving becoming an additional responsibility as this meant driving to the shops for grocery shopping: “Strangely enough Peter made his own mind up and that was it. So many other husbands put up a fight but I guess it is because their wives do not drive. I always drove” (Mary—Booklet 2).

Usefulness of written material

Participants who looked at Booklet 2 suggested distributing it to organizations such as the Memory Clinic and the Alzheimer’s Society. Most participants who read Booklet 2 requested a copy as he or she felt it was useful and had a rich amount of information:

I like the idea of the problem and then the possible solution. That reads well I think. Yes that is good I like it. It is full and it is good. You should put this out into the Alzheimer’s Society. (Chris—Booklet 2)

The participants felt that the Booklet 2 gave a wealth of detail for food-related management and was specifically directed toward informal caregivers:

I suppose life revolves around food. It’s curious that your book is on food, shopping, preparation and eating. . . . I think you have put your fingers on all the basics that are a concern. . . . There are interesting points that you have brought up here. And it makes you recognise just how much we are dealing with. (Ian—Booklet 2)

Discussion

The research used a Think-Aloud approach to evaluate two booklets on how to cope with the impact of dementia progression on food-related processes. One booklet was already in use and covered the themes of (a) changes in appetite, (b) changes in food preparation, (c) methods of eating, (d) eating out, and (e) dental care and swallowing difficulties. The second booklet encompassed these themes but sought to include all three food-related processes (shopping for, preparing, and eating food) by adding information on shopping for and preparing food. In addition, this second booklet included quotes from caregivers from a previous piece of research. The study has indicated the potential support this specialized material can provide for caregivers of people with dementia. Furthermore, it provides findings which can inform the development of a future booklet.

Caregivers liked the tips provided in both booklets, for example, those tips that would help the care-recipients to gain weight. Being provided with such information at an early stage was perceived as beneficial. It was noted, however, that providing food-related information on later stages of dementia could raise concerns for caregivers caring for people with early stage dementia caregivers as they became aware of future behaviors and challenges. Clearly, sensitivity must be exercised when developing any future booklet.

The participants reading Booklet 1 were the only respondents who commented on dental and hygiene care, and the caregivers agreed that it was a difficult task for the person with dementia to perform. Shopping for food was covered only in Booklet 2, and respondents commented on the issues of recipients of care overstocking food items and the importance of caregivers maintaining their usual shopping routine. The participants who commented on Booklet 2 found it insightful and a relief that maintaining the same routine in terms of purchasing the same items was advocated. Some caregivers agreed with the suggestion in the booklet that shopping was a day out for the caregiver and care-recipient while others disagreed, preferring to shop on their own due to behavioral difficulties of the person with dementia. This would need to be reflected in any future booklet.

The main eating difficulties reported from previous research were appetite, loss of ability to recognize food, difficulty eating, and swallowing (Keller et al., 2008; Riviere et al., 2001). The findings from the Think-Aloud analysis in this study indicate that eating is not the only concern for caregivers in dementia progression, but food shopping and preparation are also key issues. For example, shopping, purchasing food, taking on the driving role, and dangers in the kitchen were addressed only in Booklet 2 and participants regarded them as important issues. Therefore, incorporating all three food processes—shopping, food preparation, and eating—in a new booklet could be potentially beneficial for the participant.

The participants, regardless of which booklet they read, felt that the information and format of the written material was beneficial and informative. They were not overwhelmed by the amount of content in the booklet; they liked the pictures and colorful flow. Caregivers who read Booklet 2 thought it was important to include quotes from previous caregivers as this helped them engage with the booklet and showed that others have also experienced a similar situation to them.

The participants recognized the importance of receiving specialized food-related information and advice on dementia and spoke of how he or she could develop their coping skills, such as leaving a glass of water at the recipient’s side table to encourage them to drink more water. In addition, participants recognized the benefits of the material and the effect it can have as changes occur within their food role. Those who read Booklet 2 suggested that it should be distributed to Alzheimer’s organizations for future caregivers to read.

Previous research has recognized that health information that is tailored to meet the unique needs and interests of specific individuals is more effective in behavior change than generic information (Bull, Holt, Kreuter, Clark, & Scharff, 2001; Higgins & Barkley, 2004). The provision of useful food-related information for all stages of dementia can lead to improvements in food habits (Riviere et al., 2001), potentially reducing burden and increasing enjoyment in this area of care.

Findings from this research echo that of previous work which indicates that caregivers would welcome information on food-related processes early in their caregiving role (Chang & Roberts, 2008) and that food-related difficulties are experienced with people with mild and mid stage of dementia as well as those with sever dementia (Gillick & Mitchell 2002; Holm & Söderhamn, 2003; Morris & Volicer, 2001; Njegovan, Hing, Mitchell, & Molnar, 2001; Papachristou et al., 2013). This information has the potential to prepare caregivers to take on an active role in decision making.

Methodology Evaluation

This is a small qualitative study focusing on caregivers’ initial thoughts and perceptions on information contained in two booklets. Think-Aloud is a quick and cost efficient means of exposing the designers of a product to feedback from those who will actually be using it. It allows participants to provide direct feedback on their immediate thoughts on a product (in these case booklets). In addition, an opportunity to raise and comment on issues that are important to them rather than just respond to what the researcher may think is important. A limitation is that the participants do not have much time, when compared with other methods such as an interview or questionnaire, to digest and reflect on the information provided to them. Indeed, it is likely that not all that they thought is discussed (Ericsson & Simon, 1993). It follows that the Think-Aloud approach generates immediate thoughts and perceptions rather than a more in-depth consideration. Furthermore, although the approach relies less on researcher prompts than other techniques, such as interviews, inevitably prompts were still required as participants tend to want to think about their responses and give a “smart” answer rather than their immediate thoughts.

The caregivers were all at literacy level and therefore did not have any limitations in understanding, reading, or conducting the Think-Aloud task. However, if the participants did have literacy issues, then this may not have been an ideal method to use as the amount of comments generated would have been limited. In addition, this study does not assess the impact of the booklet over time. Nor does it address the impact on those caring for people at different stages of dementia. Further research could recruit a larger cohort and measure the stage of dementia, using, for example, the Mini Mental State Examination tool (Folstein, Folstein, & McHugh, 1975) or capturing the care-recipient’s nutritional status by using the Mini Nutritional Assessment tool (Vellas et al., 1999), and evaluate the impact of the booklets over time in terms of behavior and coping.

Conclusion

This study is the first to explore informal caregivers’ perceptions of written materials about all three food-related processes. This study has shown that tailored information has the potential to enhance caregivers’ confidence and support them in making decisions to help them adapt to food-related changes. The findings from this research suggest that the information provided raised awareness, illustrated coping skills, and offered practical tips. Booklet 2 included information and advice on all three food-related processes (shopping for food, preparing food, and eating food). The feedback was positive. Furthermore, Booklet 2 included quotes from other caregivers of people with dementia. These quotes helped participants engage with the booklet and realize that other caregivers were coping with similar challenges. There were also suggestions for improving on the booklet. Booklet 2 could be further developed, and its impact on caregivers evaluated in a larger study.

Footnotes

Acknowledgements

The authors acknowledge University of Surrey, the Alzheimer’s Society UK, and the family members of people with dementia who participated in this study.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

Iliatha Papachristou is a research associate at the Department of Applied Health Research, at the University College of London. She 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.

Gary Hickeys 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. He 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 United Kingdom and overseas, on ethics and corruption.

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 United Kingdom. His research interests include mental health in later life, and he was the chief investigator on the Evidence-Based Interventions in Dementia (EVIDEM) Program, funded by the National Institute of Health Research (2007-2013). He was also associate director of the National Dementias and Neurodegenerative Diseases Research Network (DENDRON) for 2006 to 2015.

References

Andrieu

Reynish

Nourhashemi

Ousset

P. J.

Grandjean

Grand

… Vellas

(2001). Nutritional risk factors for institutional placement in Alzheimer’s disease after one year follow-up. The Journal of Nutrition, Health & Aging, 5, 113-117.

Atta-Konadu

Keller

H. H.

Daly

(2011). The food-related role shift experiences of spousal male care partners and their wives with dementia. Journal of Aging Studies, 23, 305-315.

Banning

(2008). The Think-Aloud approach as an educational tool to develop and assess clinical reasoning in undergraduate students. Nurse Education Today, 28, 8-14.

Baumann

J. F.

Jones

L. A.

Seifert-Kessell

(1993). Using Think-Aloud to enhance children’s comprehension monitoring abilities. The Reading Teacher, 47, 184-193.

Bilotta

Bergamaschini

Arienti

Spreafico

Vergani

(2010). Caregiver burden as a short-term predictor of weight loss in older outpatients suffering from mild to moderate Alzheimer’s disease: A three months follow-up study. Aging & Mental Health, 14, 481-488.

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101.

Bull

F. C.

Holt

C. L.

Kreuter

M. W.

Clark

E. M.

Scharff

(2001). Understanding the effects of printed health education materials: Which features lead to which outcomes? Journal of Health Communication: International Perspectives, 6, 265-279.

Carr

S. C.

(1998). Assessing learning processes: Useful information for teachers and students. Intervention in School and Clinic, 33, 156-162.

Chang

Roberts

(2008). Feeding difficulty in older adults with dementia. Journal of Clinical Nursing, 17, 2266-2274.

10.

Done

D. J.

Thomas

J. A.

(2001). Training in communication skills for informal caregivers of people suffering from dementia: A cluster randomized clinical trial comparing a therapist led workshop and a booklet. International Journal of Geriatric Psychiatry, 16, 816-812.

11.

Ericsson

K. A.

Simon

H. A.

(1993). Protocol analysis: Verbal reports as data (Rev. ed.). Cambridge, MA: MIT Press.

12.

Fjellström

Starkenberg

Wesslen

Licentiate

M. S.

Backstrom

A. T.

Faxen-Irving

The OmegAD Study Group. (2010). To be a good food provider: an exploratory study among spouses of persons with Alzheimer’s disease. American Journal of Alzheimer’s Disease & Other Dementias, 25, 521-526.

13.

Folstein

McHugh

(1975). Mini-Mental State: A practical methods for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198.

14.

Francis

Taylor

Stricklamd

A. W.

(2004). Needs and preferences assessment for an in home nutrition education program using social marketing theory. Journal of Nutrition for the Elderly, 24(2), 73-92.

15.

Gillick

M. R.

Mitchell

S. L.

(2002). Facing eating difficulties in end-stage dementia. Alzheimer’s Care Quarterly, 3, 227-232.

16.

Higgins

M. M.

Barkley

M. C.

(2004). Improving effectiveness of nutrition education resources for older adults. Journal of Nutrition for the Elderly, 23(3), 19-54.

17.

Holm

Söderhamn

(2003). Factors associated with nutritional status in a group of people in an early stage of dementia. Journal of Clinical Nutrition, 22, 385-389.

18.

Ikeda

(2002). Changes in appetite, food preference, and eating habits in frontotemporal dementia and Alzheimer’s disease. Journal of Neurology, Neurosurgery & Psychiatry, 73, 371-376.

19.

Isaia

Mondino

Germinara

Cappa

Aimonino-Ricauda

… Massaia

(2011). Malnutrition in an elderly demented population living at home. Archives of Gerontology and Geriatrics, 53, 249-251.

20.

Jobe

J. B.

Mingay

D. J.

(1990). Cognitive laboratory approach to designing questionnaires for surveys of the elderly. Public Health Reports, 105, 518-524.

21.

Keller

H. H.

Martin

L. S.

Dupuis

Genoe

Edward

Cassolato

(2010). Mealtimes and being connected in the community-based dementia context. Dementia, 9, 191-213.

22.

Keller

H. H.

Schindel

Dupuis

Reimer

Genoe

(2015). Strategies to support engagement and continuity of activity during mealtimes for families living with dementia; a qualitative study. BMC Geriatrics, 15, Article 119.

23.

Keller

H. H.

Smith

Kasdorf

Dupuis

Martin

Edward

… Geneo

(2008). Nutrition education needs and resources for dementia care in the community. American Journal of Alzheimer’s Disease & Other Dementias, 23, 13-22.

24.

Koro-Ljungberg

Douglas

McNeill

Therriault

Malcolm

(2012). Re-conceptualizing and de-centering Think-Aloud methodology in qualitative research. Qualitative Research, 18, 256-265.

25.

Livingston

Frankish

(2015). A global perspective on dementia care: A Lancet Commission. The Lancet, 386, 933-934.

26.

Lopez

O. L.

Becker

J. T.

Robert

A. S.

William

Kaufer

D. I.

Saxton

J. S.

… Dekosky

S. T.

(2003). Psychiatric symptoms vary with the severity of dementia in probably Alzheimer’s disease. The Journal of Neuropsychiatry and Clinical Neurosciences, 15, 346-353.

27.

Luger

T. M.

Houston

T. K.

Suls

(2014). Older adult experience of online diagnosis: Results from a scenario-based Think-Aloud protocol. Journal of Medical Internet Research, 16(1), e16.

28.

Manthorpe

Watson

(2003). Poorly served? Eating and dementia. Journal of Advanced Nursing, 41, 162-169.

29.

Morris

Volicer

(2001). Nutritional management of individuals with Alzheimer’s disease and other progressive dementias. Nutrition in Clinical Care, 4, 148-155.

30.

Navratilova

Jarkovsky

Ceskova

Leonard

Sobotka

(2007). Alzheimer disease: Malnutrition and nutrition support. Clinical and experimental pharmacology and physiology, 34(S1), S11-S13.

31.

Nelis

Quinn

Clare

(2008). Information and support interventions for informal caregivers of people with dementia. The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.

32.

Njegovan

Hing

M. M.

Mitchell

S. L.

Molnar

F. J.

(2001). The hierarchy of functional loss associated with cognitive decline in older persons. Journal of Gerontology, Series A: Biological Sciences and Medical Sciences, 56, M638-M643.

33.

Nyman

S. R.

Yardley

(2009). Usability and acceptability of a website that provides tailored advice on falls prevention activities for older people. Health Informatics Journal, 15, 27-39.

34.

Ory

M. G.

Hoffman

R. R.

Yee

J. L.

Tennstedt

Schulz

(1999). Prevalence and Impact of Caregiving: A Detailed Comparison between Dementia and Nondementia Caregivers. The Gerontologist, 39(2), 177-185.

35.

Østbye

Tyasi

McDowell

Koval

(1997). Reported activities of daily living: agreement between elderly subjects with and without dementia and their caregivers. Age and Ageing, 22(2), 99-106.

36.

Papachristou

(2014). An audit report on food-related care and dementia written information. Generations Review, 24(2), 19-20.

37.

Papachristou

Giatras

Ussher

(2013). Impact of dementia progression on food-related processes: A qualitative study of caregivers’ perspectives. American Journal of Alzheimer’s Disease & Other Dementias, 28, 568-574.

38.

Papachristou

Hickey

Iliffe

(2015). Dementia informal caregiver obtaining and engaging in food-related information and support services. Dementia. 1471301215583148, first published on April 22, 2015.

39.

Papastavroue

Kalokerinou

Papacostas

Tsangari

Sourtzim

(2007). Caring for a relative with dementia: Family caregiver burden. Journal of Advanced Nursing, 58, 446-457.

40.

Patton

M. Q.

(2002). Two decades of developments in qualitative inquiry: A personal, experiential perspective. Qualitative Social Work, 1, 261-283.

41.

Pinquart

Sörensen

(2007). Correlates of physical health of informal caregivers: A meta-analysis. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 62, 126-137.

42.

Prince

Albanese

Guerchet

Prina . (2014). Nutrition and dementia: A review of available research. Alzheimer’s disease International, The Global Voice on Dementia. London. February 2014.

43.

Riviere

Gillette-Guyonnet

Voisin

Reynish

Andrieu

Lauque Salva

Frisoni

Nourhashemi

Micas

Vellas

(2001). A nutritional education program could prevent weight loss and slow cognitive decline in Alzheimer’s disease. The Journal of Nutrition, Health & Aging, 5, 295-299.

44.

Sami

Manthorpe

(2013). Everyday decision-making in dementia: Findings from a longitudinal interview study of people with dementia and family carers. International Psychogeriatrics, 25, 949-961.

45.

Small

J., A.

Geldart

Gutman

(2000). Communication between individuals with dementia and their caregivers during activities of daily living. American Journal of Alzheimer’s Disease and Other Dementias, 15(5), 291-302.

46.

Vellas

Guigoz

Garry

P. J.

Nourhashemi

Bennahum

Lauque

Albarede

J. L.

(1999). The Mini Nutritional Assessment (MNA) and its use in grading the nutritional state of elderly patients. Nutrition, 15, 116-122.

47.

Vitaliano

Jianping

Scanlan

J. M.

(2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129, 946-972.

48.

Watson

Green

S. M.

(2006). Feeding and dementia: A systematic literature review. Journal of Advanced Nursing, 54, 86-93.