Exploring Caregivers’ Clothing Choices for Individuals With Severe Alzheimer's Disease: An Application of the Theories of Self-Complexity and Choosing for Others

Abstract

The number of older Americans as well as those living with Alzheimer's is rapidly growing. Alzheimer's dementia is a disease that causes problems with memory, thinking, and behavior. The role of caregivers is important, as they are the individuals who assist those with Alzheimer's in completing not just medical tasks, but fundamental activities of daily living, such as selecting garments to wear and getting dressed. The purpose of this study was to understand how caregivers make such choices. Interviews with twelve caregivers of individuals with severe stage Alzheimer's were conducted in nursing homes in the United States. Four themes emerged: The Role of Proxy, Routine Selections, Gift-Giving for Loved Ones, and Triangular Relationships. In all cases, the recipient's preferences were important to caregivers’ choices. Further research on the outcomes of making choices for others is needed.

Keywords

Alzheimer's caregivers clothing self-complexity choosing for others

According to the Alzheimer’s Association (2020), more than 5 million Americans of all ages are living with the disease and this number is projected to increase to 14 million by 2050. Most individuals diagnosed with Alzheimer's are aged 65 and older, and one out of 10 Americans aged 65 and older has this disease (Alzheimer’s Association, 2020). However, there is also a growing population of individuals developing Alzheimer's at a younger age, as approximately 200,000 Americans under 65 are currently living with early-onset Alzheimer's (Alzheimer’s Association, 2018).

Alzheimer's is a specific brain disease that is a cause of dementia, which is a general syndrome of cognitive and reasoning impairment, including memory decline (Larson et al., 1992). Alzheimer's disease can cause problems with memory, thinking, personality, and behavior changes (Alzheimer’s Association, 2018). Later and more severe stages of the disease often result in the need for assistance with day-to-day functions and activities, such as feeding and clothing oneself.

Because of the nature of the disease, individuals with Alzheimer's have significantly different clothing-related needs than other adults (Kopec, 2018). For example, they may not be able to dress themselves because of memory limitations (Buse & Twigg, 2016; Kasper et al., 2014). Moreover, individuals living with severe stage Alzheimer's may not be able to choose what they want to wear, and therefore, must rely on the choices of their caregivers. Consequently, the role of caregivers is important, as they are the people who assist those with Alzheimer's in completing not just medical-related tasks, but fundamental activities of daily living, such as selecting garments to wear and the process of getting dressed. Because clothing is used to express self-concept, social identity, and for comfort and protection (McNeill, 2018), the role of caregivers in selecting clothing for those with Alzheimer's is critical. However, thus far, their role has been an overlooked topic in research on dress and Alzheimer's disease (Twigg, 2010).

To address this gap, the purpose of this qualitative study was to understand how caregivers make such choices in light of the challenges presented by the disease. Interpretation of interviews conducted with caregivers of individuals with severe stage Alzheimer's sheds light on the decisions involved in making dress-related choices for those who can no longer do so for themselves. The theories of Self-Complexity and Choosing for Others are used as the lens through which the findings and implications of the study are discussed.

Background

Clothing and Alzheimer's Disease

Researchers have studied personality changes and various needs in relation to Alzheimer's, and the overall interest in this area appears to have increased (Twigg & Buse, 2013). For example, Twigg (2010) examined the issues involved in identity and clothing for individuals with dementia. Twigg and Buse (2013) indicated that clothing is closely related to the well-being, care, and identity of individuals with memory issues because it serves important purposes for these individuals. Specifically, boosting self-confidence is one of the cardinal psychological effects of clothing (Chang et al., 2018; Johnson et al., 2014). Likewise, certain clothing may provide familiarity, enhancing mood or behavior by supporting a sense of security and individuality. Clothing needs for consumers with Alzheimer's is a neglected topic of investigation, even though clothing is conceptualized in the literature as an important agency of selfhood. It is important to note that, with dementia, a patient's concern for their appearance can rapidly decline (Twigg, 2010). The same decline can occur with the progression of Alzheimer's disease. Loved ones are often the first to notice changes in dressing behaviors or loss of interest in appearance because of their close relationship with the patient. Therefore, at this stage, caregivers often need to assist those with Alzheimer's in selecting garments to wear and getting dressed (Buse & Twigg, 2016).

Current clothing choices specifically designed for individuals with Alzheimer's are limited, and few companies make clothing for this population. For example, Silvert's, a Canadian company, provides clothing that supports independent dressing by using magnets, zippers, Velcro, and easy closure options (Silvert, 2018). Buck and Buck is another company that makes clothing for individuals with Alzheimer's and provides special Alzheimer's clothing solutions in the United States (Buck & Buck, 2018). Both companies carry functional and comfortable clothing, but do not always merge function with aesthetic properties. Yet, the aesthetic aspect of clothing is related to the expression of the self, and therefore, important to the psychological satisfaction of the individual (McFarlane & Samsioe, 2020). Moreover, they are just two of a small number of companies producing adaptive clothing, and therefore, cannot address all of the clothing needs and challenges of individuals with Alzheimer's.

The Role of the Caregiver

A caregiver is an individual who is involved in assisting others with activities of daily living as well as medical-related tasks, such as managing medications. According to the Alzheimer's Association (2015), approximately 15.7 million adult family caregivers care for someone with the disease. Most caregivers are over fifty years old and are fairly evenly split among spouses, children, and professionals such as nurses (Brodaty & Green, 2002). Studies have found that caregivers spend, on average, thirteen days each month on tasks related to household chores and six days per month on dressing, bathing, feeding, and toileting (Family Caregiver Alliance, 2016; Kasper et al., 2014). Many caregivers also assist with self-care and mobility (Kasper et al., 2014). Compared to caregivers of individuals without Alzheimer's, caregivers of individuals with the disease must spend more time monitoring the individual's health (National Alliance for Caregiving, 2017). According to the 2018 National Alliance for Caregiving Research Report, family caregivers of individuals with Alzheimer's are more likely to assist with emotional issues, mental health problems, and behavioral changes.

As Alzheimer's disease progresses, the loss of the individual's shared memories with a family member who is a caregiver, along with behavioral changes, can sometimes lead to difficulty in care. Although family members who are caregivers express overall positive feelings about caregiving, especially satisfaction from helping others (Yu et al., 2018; Zarit, 2012), they often report physical difficulties and emotional exhaustion as a result of caregiving (Large & Slinger, 2013; MacNeil et al., 2009). Several studies (Large and Slinger, 2013; MacNeil et al., 2009) have found that caregivers of individuals with Alzheimer's have a greater degree of emotional stress and physical difficulties than caregivers of individuals without the disease.

According to the literature on caregiving, dressing can be a caregiver's biggest challenge. This is in part because individuals with Alzheimer's often resist assistance (Buse & Twigg, 2016). Consequently, research with caregivers indicates a preference for clothing that accommodates assistance in dressing, such as fabrics with stretch (Buse & Twigg, 2016). Outdated and worn-out clothing might be viewed as improper dress in public and lack of concern for the patient. However, it has been found that replacing clothing is difficult for the families, as clothing reflects their memories of the individual (Buse & Twigg, 2016). According to McColgan (2005), decisions regarding what clothing to keep and what to discard often reflect the level of caregiver attention in relation to ambiguous boundaries of public and private spaces that are typical of assisted living facilities.

The demands of caregiving often intensify at the patient's end of life. A loss of communication ability on the part of individuals with Alzheimer's may lead to the caregivers’ feeling as if they have lost the person they once knew (Adams & Sanders, 2004; Collins et al., 1993). Interestingly, Buse and Twigg (2016) found that clothing can be used as a device to keep memories and aspects of the self from disappearing altogether, because clothing is meaningful to the families and often conveys clues as to aspects of the individual's identity. At the same time, expressing the identity of the individual with Alzheimer's can help to facilitate and strengthen their interactions with others (Hicks et al., 2019).

Conceptual Framework

To address the purpose of the study, a conceptual framework was developed based on the social-psychological theory of Self-Complexity and the consumer theory of Choosing for Others. Linville (1987) developed a social-cognitive theory of Self-Complexity, which explains the diverse aspects of the self that are developed for the meaningful aspects of one's life (Pilarska & Suchańska, 2015). According to Linville (1987), the individual can express self-concepts for diverse roles, and as the number of roles in one's life increases, stress-buffering may occur because the failure of many self-concepts is more likely than the failure of few. In the case of individuals with severe stage Alzheimer's, the self-concept becomes fragmented, as some aspects may surface while others recede, and new aspects develop. Those caring for individuals with the disease must identify the appropriate means of assisting with expressing aspects of the self-concept that align with the individuals because they are unlikely able to do so themselves. Thus, clothing choices made by the caregiver are made more complex by the need to be able to express elements of another person's self-concept.

The theoretical perspective of Choosing for Others was developed by Liu et al. (2019) to explain how consumers make choices for others. As individuals are surrounded by circumstances requiring them to make choices not only for themselves, but also for others, these choices can be determined based on personal or social influences. According to Liu et al.'s (2019) perspective, consumer choices for others can be categorized based on the interaction of two fundamental foci: (1) the chooser's social focus and (2) the chooser's consideration of consumption preferences. The chooser's social focus can be either relationship- or recipient-focused. The chooser's consideration of consumption preferences can either prioritize the recipient's preferences or balance the preferences of both the recipient and the chooser based on the situation. To this end, the framework identifies four dimensions. First, the “gift-giving” dimension is when a chooser focuses on the relationship between the chooser and the recipient as well as the recipient's preference for the consumption choice (Liu et al., 2019). Second, the “joint-consumption” dimension is when a chooser focuses on the relationship but balances the recipient's preference with the preference of the chooser based on the circumstance (Liu et al., 2019). For example, if one's choice is based on a relationship focus and the preferences of both the recipient and the chooser, the chooser will likely select the option which combines preferences for both, and which improves the relationship. Third, the “everyday favors/pick-ups” dimension of choosing for others focuses on the recipient alone and his/her preference (Liu et al., 2019). Thus, the chooser will consider the option that best approximates the recipient's preferences. Fourth, the “caregiving” dimension relates to the situation of choosing for others when focusing on the recipient alone, while balancing the preference of the recipient and the chooser.

Specifically, this study applies Liu et al.'s (2019) framework to understand caregivers’ social focus and consideration of consumption preferences when choosing clothing for Alzheimer's patients. Although both family members and professional caregivers must select clothing for individuals with Alzheimer's, their clothing selection motivations may differ depending on the relationship with the patient and the environment they are in. In this study, the “gift-giving” and “joint-consumption” dimensions, as relationship-based selection motivations, are viewed as more relevant to family member caregivers, whereas the “everyday favors/pick-ups” and “caregiving” dimensions are recipient-based clothing selection motivations which may be more relevant to professional caregivers. In this study, Liu et al.'s (2019) perspective helps to explain how clothing choices are made for Alzheimer's patients by caregivers, particularly given the fragmentation of the self and increased self-complexity experienced by individuals with Alzheimer's disease.

Method

This study employed qualitative interviews with caregivers to explore the clothing choices they make for individuals with severe Alzheimer's disease. Upon IRB approval, participants were recruited through both email contacts with senior living homes in the Southwestern region in the United States and via the snowball sampling method. Professional caregivers were recruited from the senior living homes, whereas family member caregivers were recruited through referrals by the nurses at the senior living homes as well as through the acquaintances of the researchers. Participation was voluntary and each was compensated $50 for participation. A total of 12 family members and professional caregivers between 24 and 81 years old participated in the interviews which took place over three months. Participants were recruited and interviews were conducted until saturation was achieved. Of the twelve, six are professional caregivers and six are family members (see Table 1). The family member caregivers were asked to respond to interview questions based on caring for their particular relative with severe Alzheimer's disease, while the professional caregivers were asked to respond based on a particular patient they assisted with on a regular basis. Each interview was audio-recorded and lasted between 20 and 60 min. To maintain confidentiality, pseudonyms were assigned in place of actual names. Interview questions pertained to the choices that caregivers make, which included: As a caregiver, what types of clothing do you choose for this individual? What is the most important aspect in choosing clothing for them? Upon completion of the interviews, recordings were transcribed verbatim.

Table 1.

Participant Demographics.

Pseudonym	Age	Gender	Ethnicity	Relationship	Length of Caregiving	Alzheimer's Stage
James	49	Male	White	Professional Caregiver	More than 4 years	Severe
Kathy	25	Female	Hispanic	Professional Caregiver	More than 4 years	Severe
Amanda	30	Female	White	Professional Caregiver	More than 4 years	Severe
Cynthia	24	Female	White	Professional Caregiver	6–12 months	Severe
Carol	44	Female	Hispanic	Professional Caregiver	6–12 months	Severe
Bailey	43	Female	White	Professional Caregiver	2–4 years	Severe
Samantha	24	Female	Hispanic	Granddaughter	2–4 years	Severe
Ruth	77	Female	White	Sister-in-law	6–12 months	Severe
Olivia	25	Female	White	Granddaughter	More than 4 years	Severe
Ava	60	Female	White	Adult child	More than 4 years	Severe
Grace	80	Female	White	Spouse	More than 4 years	Severe
Ivy	81	Female	White	Sister-in-law	More than 4 years	Severe

A thematic approach to analysis was used to identify the categories of meaning shared by the participants (van Manen, 1990). The process began with verbatim transcription of the interviews collected with the participants. Each researcher examined the transcripts and searched for patterns across the data. Then, each researcher specified categories of meaning based on these patterns that were discussed and then grouped into broader themes and sub-themes (Hodges, 2011). The team worked back and forth until an agreement about themes and sub-themes was achieved to ensure analytic rigor (Rose & Johnson, 2020). Meanings within the themes and sub-themes were then examined alongside the literature on caring for individuals with memory issues and the theoretical perspectives of Self-Complexity and Choosing for Others. For example, the need to balance the preferences of the individual with Alzheimer's disease with the clothing selections of the caregiver was an issue that emerged throughout the data. To interpret the meanings (Spiggle, 1994) important to this issue, the data were explored for the range of experiences articulated by caregivers regarding the challenges they face in clothing selection, such as the practical need for dressing and undressing the individual, while considering the aesthetic preferences of the individual and their need for self-expression. As a result of this iterative analysis and interpretation process, an in-depth understanding of how caregivers make clothing choices for those who can no longer choose for themselves was achieved.

Results

Four themes emerged from the qualitative interviews with family members and professional caregivers based on the interpretation of the data. The themes are: The Role of Proxy, Routine Selections, Gift-Giving for Loved Ones, and Triangular Relationships. It is important to note that, across all themes, comfort was consistently highlighted in participants’ decisions regarding clothing for the individual with Alzheimer's disease; hereafter, referred to as the “patient”.

The Role of Proxy

The caregiver, whether a professional or a family member, acts as an informal proxy for the patient. That is, the caregiver chooses what the patient wants to wear based on what they know about him or her (e.g., “I think she spent most of her life being…you know she always had to be well dressed, well-mannered, and I think that's the way she likes to appear and that's what I choose”). This theme includes three sub-themes: Proxy of Past Self, Proxy of Present Self, and From Confusion to Composure. One of the frequently repeated answers about the clothing choices participants made for Alzheimer's patients was the desire to reflect the individual's self before Alzheimer's became severe.

Proxy of Past Self

According to participants, Alzheimer's patients look for clothing that they wore before they got sick as it serves as a reflection of who they are, regardless of the changes caused by the disease. This is an interesting theme because the patients tend to choose clothing that they wore in the past, even though they often do not remember their past occupations or experiences. Thus, the caregivers also try to choose clothing to represent the past self of their patients. For example, Cynthia states,

I think she spent most of her life being, you know, she always had to be well dressed, well-mannered, and I think that's the way she likes to appear. It's how they used to be, you want to base it off of how much they used to dress before, ‘cause they’re still, they’re still the same person, so you want to carry over as much as you can. She was a first-grade teacher and a very busybody wife, so something very functional.

Even though the styles of individuals with Alzheimer's might be different from today's styles, some of them have classic and professional preferences stemming from their past experiences, and these preferences are reflected in what they wear currently. As Cynthia further explains,

If she is not dressed properly or looking nice the way that she used to be, or you know, the way they remember them before they had Alzheimer's. Also, her family will let us know, like, ‘Well my mom never wore anything that didn’t match and says she likes to match.’ Then we need to choose clothing for her based on that.

Proxy of Present Self

Along with clothing choices based on the individual's past roles, participants also choose clothing as a Proxy of Present Self. Personal preferences are targeted, including color and fabric, but also family expectations for that individual's appearance. Cynthia says that her patient has favorite colors and patterns,

She likes blues and greens. She has a few patterns. And then all of her sweaters are in bright colors like pink and she has a multi-colored one and a blue green one that's her favorite.

Carol says that she does not choose pink or bright colors for her patient's clothing, instead, she selects more natural and dark colors which are available from her closet. Interestingly, the patient herself chooses a different color for the top and the bottom.

Her style, she has a lot of, like I said, dark colors, like black. Most of her slacks are either black or brown and then she has her shirts, she has grey shirts with like black flowers. She has red shirts and sweaters, uhm, she has some khaki pants and it's just like, just like natural that she likes to wear, she hardly has any, [for example] I don’t think she has anything pink.

In addition, family members’ expectations for the individual's appearance can determine the clothing choices by caregivers for their patients, as well as selections by family members. Cynthia explains,

If her family sees that their mom isn’t well-dressed or something they’re worried about how she would have cared for herself before, they’re worried about how I would be caring for her now. Her daughter got a whole bunch of clothes for her, especially the pattern shirts. These patterns are new and fashionable.

Confusion to Composure

Participants who are caring for a relative indicated that the patient is often overwhelmed and confused when they need to choose from a set of options; therefore, the caregivers seek to select clothing to remedy this confusion and help them gain composure. For example, Ruth said that her sister-in-law with Alzheimer's is very confused and anxious, and needs help choosing an appropriate outfit or selecting styles. Thus, several participants try to limit the options presented to the patient in order to reduce anxiety. According to Cynthia, too many options can overwhelm the patient, so she tries to limit it to two.

Too many options are overwhelming to her, so I show her two different clothing options to choose from. Alzheimer's patients, like, limiting it to two items, like, takes out the stress of it. I’ll give her two choices and if she can’t make a decision, I will decide for her, or if she does, then that is fantastic. That's what we’ll wear that day. But with Alzheimer's patients, like, limiting it to two items takes out the stress of it. So I’ll let her pick it out and she actually picked out what she's wearing today.

Amanda also indicates that she begins with two clothing options that her patient can choose from, and if neither is chosen, she then provides another two options until a selection is reached.

I usually get two sets of clothing out and she chooses what she wants to wear. I take two of her clothes out of the closet and I show them to her and she chooses and if she doesn’t like either one then she’ll tell me she doesn’t like it. And then I put those to the side and go and get two more.

Routine Selections

For Routine Selections, the caregivers tend to choose clothing that the patients themselves routinely choose for daily activities (e.g., “I’ll let her pick it out and she actually picked out what she's wearing today, and she's worn the same thing before”). This theme includes sub-themes of Daily Comfort and Ease of Use. There is no doubt that among participants, practicalities are important motivations for clothing selection for both themselves as caregivers and for the patient.

Daily Comfort

The most common clothing selection motivation is comfort, and this is the case for both family members and professional caregivers. For most of the interview participants, comfort means a loose fit. Like Cynthia and Amanda, Kathy says that she will choose two outfits and let the patient decide which one she wants to wear. Even though the patient may not be able to express exactly what they want or like, participants frequently talk about communicating with the patient to try and find the best clothing selection. Kathy explains,

I mean, you can show her the outfits, whatever, but she really doesn’t choose, she really sometimes doesn’t pick, so we have to pick for her. I’ll get two outfits to show her and let her choose, but most of the time she doesn’t really say much to us. I choose clothing that is comfortable for her, that's really loose. That's easy for us to take off her, and like we are able to when we need to change her, take her to the restroom or something.

Samantha indicates that comfort is the key factor when making new clothing purchases for her grandmother with Alzheimer's. Her grandmother usually expresses whether or not she likes a certain clothing item. Overall, Samantha emphasizes comfort as one of the main reasons for clothing selection. She states,

Comfort and if she likes it, that is enough to buy it. Sometimes she might not want to wear it when we buy it. It's just talking her into it when we buy it. Comfortability and if she likes it at the store, that is enough to buy it.

Ease of Use

As caregivers, participants indicated that they tend to choose clothing that is easy to get on and off the body of the patient, as this is a necessity. Indeed, one of the biggest challenges as caregivers is helping to dress or undress the patient. Thus, clothing that is easy and convenient for both caregiver and patient are crucial factors for clothing selection from the participants’ point of view. As James explains,

I like the shirts that you have the button up the back. Because you can unsnap them and take them off like this and they don’t have to pull it over their head. Because that makes their arms have to go up higher.

In addition, most of the participants talk about the appropriate sleeve and leg length of clothing as being important because it is related to safety, maintaining an acceptable temperature, and overall health. Kathy states that “The long sleeve is good because most [patients] are always cold, like the one I [helped to dress], she's always cold.” Likewise, Cynthia explains that she looks for –

Something that keeps her warm. She gets cold very easily and whenever she gets cold she gets very antsy. So keeping her warm like kind of keeps her calm. Also, something that's easy for her arms. She had uh dislocated her shoulder. Way back when she was younger, so it's hard for her now, so the front, the shirt coming on from the front really helps her.

Last but not least, adaptive design needs were indicated by participants because some of the patients have physical and mobility limitations. Along with clothing that is easy to put on, clothing that accommodates physical limitation is needed. As Cynthia describes,

I mean they’re not running around being busy moms anymore, they’re unfortunately, some of them are not mobile. So, this one [patient] in particular. She actually broke her hip not too long ago, so she's not as mobile as she was. It's been a little getting used to for her.

Gift-Giving for Loved Ones

The theme Gift-Giving for Loved Ones emerged primarily among family member caregivers as they buy new clothing as gifts to give to the individual. Participants repeatedly mention that the patients usually wore clothing brought from home and that they have a limited selection in their closets at the care facility. As a result, family members will often purchase new clothing for their loved ones. Bailey, a professional caregiver, described how family members of her patient will often bring newly purchased clothing as gifts:

They buy new clothing for this individual. They’ll buy her clothing and they’ll bring it to her. If she doesn’t like it, then they take it back and then they bring her something else. They’ve tried to buy her fashionable stuff and she's not too fashionable.

Even though it is a challenge to have an individual with Alzheimer's try on clothing, family member caregivers try to find new choices. Samantha goes shopping for her grandmother once in a while, even though the shopping process is not easy for either the caregiver or the patient. Nevertheless, she wants to select clothing that her grandmother likes:

We’ll take her shopping because I do have to buy her clothes every once in a while. I don’t know if it's necessarily an opinion or if it's just maybe her mood, she doesn’t want to try on clothes. Because she knows if we go to the store she's going to have to try on a lot of clothes and she doesn’t like that. We need to make sure it fits and she does not enjoy that. But if she puts it on and likes it she’ll say ‘Oh I like this’ So she’ll look in the mirror and we’ll ask if she likes it and if it's comfortable. If not, she’ll say ‘no’ but that's really about it.

Triangular Relationships

Based on the participants’ responses, a triangular relationship between the caregiver, the patient, and others emerged as important, in that caregivers express concern about how others see the individual they are caring for. When it is a professional caregiver, they want to make sure the patient looks acceptable to family members. When it is a family member as caregiver, there is a similar concern for how the loved one would be seen by others (e.g., “When family visits, I want him to be comfortable and clean. He always dressed neatly and matched his clothing. He was very modest”). Two sub-themes help to articulate the triangular nature of the communication happening via clothing: Establishing Neatness and Cleanliness and Maintaining Dignity.

Establishing Neatness and Cleanliness

Participants highlight the importance of maintaining a neat and clean appearance for the patient (e.g., “I would definitely be concerned as to what other people think about how she looks. I always try to make sure that she looks clean”). For most of the participants, this is important not only for the patient, but also for the caregiver, because it reflects how the individual with Alzheimer's is being taken care of. James explains,

Cleanliness and neatness are important, whether it's clean and it's neat looking. If I had a resident who was eating and they got food all over their selves and I just didn’t change their clothes and just left them like that, that would probably get negative feedback. Or if their clothes didn’t fit them properly or you could tell they were just uncomfortable, like they were scratching or they were pulling on it or something like that. There are some family members or staff members that might say something to me, like ‘you need to check on her.’

Ava, a family member caregiver who is an adult child of the patient, describes how she wants her father to look nice and neat when her family visits.

I want him to look nice every day. When family visits, I want him to be comfortable and clean. He always dressed neatly and matched his clothing. He was very modest. [I think] people dressed nicely look more appealing.

Maintaining Dignity

For some participants, clothing choice, and particularly, how the individual with Alzheimer's looks to others, is an important means of maintaining dignity in the face of the severe stage of the disease. Dignity is the right of an individual to be respected and can mean self-respect exhibited through well-mannered behavior (Rehnsfeldt et al., 2014). For participants, clothing selections should be made out of a desire to maintain the dignity of the patient. This dignity is not just important because of how individuals with Alzheimer's are represented in society, but because of how families want these individuals to look. For participants, it is not about judging people by their appearance; instead, it is a tool for dignifying the person. As James explains,

The most important [thing] is keeping their style, it's keeping what they want and also dignity, like making sure that, they’re a really modest generation, so making sure that they’re covered up and making sure it's what they wanted. Knowing what they want, dignity, and comfort.

For Ivy, maintaining the individual's dignity in front of others is an important part of life in general. In the case of Alzheimer's patients, it is also about feeling “normal” and this can be communicated by what one wears:

I think the individual wants to look as nice as possible to others. Feeling as normal as possible and having dignity in front of others is important in life, regardless of health issues.

Cynthia emphasizes the importance of appearance management for individuals with Alzheimer's. Even though appearance cannot tell everything about an individual, it still communicates a sense of how the individual is being taken care of.

I know we say we shouldn’t judge a book by its cover, but still like you see someone who is well dressed, then you think they’re well-dressed, they’re taking care of themselves, and they’re being taken care of. If you see someone that's not taking care of their appearance, then you just, you assume that they’re not being taken care of or they’re not taking care of themselves.

Discussion and Implications

This study identified the factors important to clothing choices from the perspective of caregivers, and particularly the challenges they encounter when choosing clothing for individuals with severe Alzheimer's disease. The caregiver, whether a professional or a family member, acts as an informal proxy for the individual, and the role of proxy can involve not just helping to dress the individual, but also selecting the clothing that he or she will wear. The caregivers in this study expressed the desire to communicate their respect for the patient as an individual when selecting clothing, and often will use clothing from the patient's wardrobe as a clue to imagine what they would like to wear. Personal preferences of the patient, along with family expectations, were also found to be important influences in the clothing choices made by the caregivers.

The clothing choices of individuals with Alzheimer's by family member caregivers were found to emphasize options primarily based on the relationship focus and the desire to discern the patient's preferences. Both may be seen as a reflection of the love and caring shown by family members that are more reflective of the prototypical gift-giving situation (Liu et al., 2019), and different from the clothing choices made by professional caregivers. Moreover, this approach connotes the desire of a family member caregiver to dress his/her family member with caring and concern for the preservation of dignity. Regarding the clothing choices for patients by professional caregivers, the options are primarily based on the patient's focus, either highlighting his or her preferences (i.e., everyday favorites) or balancing the preferences of the patient with those of the caregiver based on the situation (i.e., caregiving context). All participants indicated a general awareness of the extent to which clothing takes on meaning beyond its function, as it can express the relationships between the caregiver and the patient, as well as convey the latter's identity (Twigg & Buse, 2013). Per Buse and Twigg (2016), clothing plays an important role in maintaining aspects of the self despite the effects of memory loss brought on by dementia. As the present study found, the same can be said for patients with Alzheimer's disease, in that clothing serves as a critical link in maintaining the relationship between family members and the patient, and for helping the professional caregiver to ensure that aspects of the patient's self are expressed through clothing choices. Further, similar to the findings of Hicks et al. (2019), expressing the identity of the individual—and in this case through clothing selected for the patient by the caregiver—helps to strengthen alignment between the patient's appearance and the expectations of others, including family members.

The four themes that emerged revealed the key considerations involved in clothing selection for individuals with Alzheimer's disease. According to the findings from the theme Role of Proxy, newly purchased adaptive clothing would not be effective in terms of familiarity for the patient and would be meaningless to the patient's family members. Interestingly, caregivers recognized that the past roles of individuals with Alzheimer's are reflected in the clothing they used to wear, such as what they did before they began experiencing more severe symptoms. Findings highlight the extent to which the patient's personal preferences in terms of colors and fabrics were described as important by the caregivers as well as family expectations of the individual's appearance, and both determined the selections made. Lastly, because confusion is a common experience among patients, caregivers used clothing selection as means of helping the patients gain composure. That is, it was found that patients are often anxious when too many clothing options are presented, and therefore, the caregivers must find ways to enable the patient to make choices without feeling overwhelmed. The findings that emerged from this theme, along with the general idea of the caregiver as a proxy, provide new insight to the literature on caregiving; particularly, for understanding the clothing needs of those who are caring for Alzheimer's patients.

The Routine Selections theme highlights the importance of clothing function for daily routines and is linked to the clothing needs of mature individuals in general (Holmlund et al., 2011). To this point, comfort surfaced as an important factor for all participants and specifically in terms of the feel of the fabric as well as proper garment fit. For example, it was found that the length of sleeves or closure of garments, such as buttons or zippers, can make patients feel uncomfortable. Thus, results indicate that comfort should be considered as a default need of individuals with Alzheimer's, which supports the findings of Buse and Twigg's (2016) study on dementia. At the same time, findings of the present study reveal the extent to which ease of dressing is necessary, particularly, as the disease progresses. Such factors should be considered in the development of adaptive clothing designed for individuals with Alzheimer's; yet, at present, available adaptive clothing options are limited. Because it is difficult to find adaptive clothing that provides practicality and aesthetic features that work for Alzheimer's patients, the participants in this study must choose from nonadaptive clothing choices. Thus, the findings of this study highlight the need for research to develop adaptive clothing designed specifically for individuals with Alzheimer's disease. Moreover, as the findings suggest, the process of doing so would greatly benefit from input provided by caregivers.

Gift-Giving for Loved Ones revealed that family members of Alzheimer's patients will often buy new clothing for their loved ones. Similar to the findings of Liu et al. (2019), gift-giving was found to be an important motivation for family member caregivers in the present study, as it offered them a way to connect with their loved ones by giving them different clothing options either for the sake of variety or to replace old and/or worn-out items. Even though the purchase of new clothing is not always well received by the patient, the family member caregivers or family members visiting their loved ones do not seem to mind repeating the purchasing and returning processes. For participants in this study, the most important factor in this gift-giving was for them (i.e., family member caregivers) to choose what the patient liked and wanted to wear, not what the caregivers wanted their loved ones to wear.

The last theme, Triangular Relationships revealed the challenges faced by caregivers in terms of what clothing communicates about the individual and the importance of appearance management, especially for individuals with Alzheimer's. Findings highlight the extent to which dignity and neatness/cleanliness communicate respectful care for the patient. Therefore, the caregivers sought to choose clothing that sends the appropriate message of care being provided and to balance the relationships among the Alzheimer's patient, family member/professional caregivers, and social expectations.

Findings from the thematic interpretation of the interview data are depicted in Figure 1. Similar and different reasons for clothing selection were found when comparing family members and professional caregivers. The Role of Proxy was a common reason for clothing selection for both caregiver types, whereas Gift-Giving for Loved Ones was the clothing selection motivation for family member caregivers and Routine Selections for professional caregivers. Further, Triangular Relationships reflect the need to balance expectations among the patient, caregiver, and society, as choices made reflect on both parties within a social context. Results suggest that close monitoring and even intervention may be needed to ensure that clothing choices made for Alzheimer's patients support their social well-being and quality of life.

Figure 1.

Findings From the Thematic Interpretation of the Interview Data.

In general, the higher level of self-complexity of individuals with Alzheimer's stems from the nature of the disease and its progression. As seen through the lens of Self-Complexity theory (Linville, 1987), the complex aspects of the self-concept among individuals with Alzheimer's may be reflected in the combining of their past and present selves. Thus, as revealed in the interpretation of the data, caregivers assist in selecting clothing for these individuals, but seek to do so by expressing their respect for reflecting what can be assumed to be the individuals’ own preferences. Because the patients are unable to choose for themselves, existing clothing from the patients’ wardrobe and knowledge of their past clothing choices are clues for caregivers to use.

Based on the perspective of Choosing for Others (Liu et al., 2019), the clothing choices of individuals with Alzheimer's by family member caregivers illustrate options based on the relationship and highlight the preferences of the recipients. Clothing choices by professional caregivers are based on the needs of individuals with Alzheimer's and either highlight their preferences or balance the preferences of both the patient and the caregiver, depending on the situation. In all cases, incorporating the preferences of individuals with Alzheimer's to the extent possible was important to caregivers’ choices.

Limitations and Suggestions for Further Research

As half of the participants in this study were family member caregivers and half were professional caregivers, different degrees of knowledge about the patient's previous style, attitude towards dress, and clothing preferences were found between the two groups. Moreover, the professional caregivers typically take care of more than one patient living in a residential care facility, which might affect their depth of involvement and the extent to which they care for each patient. In addition, family member caregivers are concerned with just one patient and someone who is a member of their own family, and therefore, their emotional attachment to and caring for the patient is likely to be greater. Thus, the significance and impact of having to make such decisions (i.e., clothing selection and purchase) will be different from those of professional caregivers. Research that explores the emotional context of family member caregivers can provide a more in-depth understanding of the complex nature of the role of family member caregivers.

For caregivers of individuals with Alzheimer's disease, the role of proxy is important for clothing selection and is part of the triangular relationship that exists between the caregiver, the patient, and others in society. To this end, as this study found, clothing choices are not only just based on the relationship between caregivers and patients, but are also based on consideration of public perception in a social context. Because of the complex nature of making product choices that are personally and socially expressive, such as those having to do with clothing, further research on the factors important to and the outcomes of making choices for others, especially for others who at one time made their own choices, is needed.

The findings of this study confirm that, as with more general conditions like dementia (Twigg, 2010), clothing can be a therapeutic tool to manage the behavioral and psychological symptoms of Alzheimer's disease. However, current clothing choices designed specifically for individuals with severe manifestations of the disease are limited and tend to focus primarily on comfort. Although comfort is important, clothing companies should also consider the aesthetic and therapeutic functions of clothing when designing for this group of individuals. In addition, although the findings of this study are an important first step, future research about clothing choices for individuals at different stages of Alzheimer's is needed, as well as the examination of the psychological effects of clothing choices on the patient's well-being.

As individuals with severe Alzheimer's disease are challenged by their impaired memory and struggles with performing everyday tasks, their caregivers provide them with necessary assistance as well as crucial physical and emotional support. Because the patient's self-concept becomes more fragmented as the disease progresses, the confusion that they experience can be managed by caregivers, such as by selecting clothing for the patient to wear that provides both comfort and some measure of identity expression. Further, even though there are ambiguous boundaries between public and private spaces in most assisted living facilities, for individuals with Alzheimer's, considering dress for both private self and public self is important, as both are important to the individual's physical and emotional well-being. Thus, future research regarding clothing choices should focus on the differences between public and private spaces in order to better understand the considerations involved in making appropriate clothing selections for individuals with Alzheimer's disease.

Footnotes

Declaration of Conflicting Interests

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

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by the Texas Tech University.

ORCID iD

Hyo Jung (Julie) Chang

Bio Sketches of the Authors

Hyo Jung (Julie) Chang, Ph.D. is an associate professor of the Department of Hospitality and Retail Management at Texas Tech University. Her research focuses on the therapeutic effects of dress, the psychological well-being of consumers, fashion consumer behavior, and innovative fashion technologies to solve consumer challenges.

Su-Jeong Hwang Shin, Ph.D. is expertise in textiles, apparel manufacturing, and statistical analysis of anthropometry data, human factors, sizing systems, 3D body scan, 3D virtual design, fit assessment, and therapeutic clothing for special populations, including children with autism spectrum disorders, and the elderly with Alzheimer's diseases.

Nancy Hodges, Ph.D. is the Burlington Industries Excellence Professor and Head of the Department of Consumer, Apparel, and Retail Studies at the University of North Carolina, Greensboro. Her research focuses on the dynamics of the global textile and apparel industries as well as using interpretive methodologies to understand the experiences of individuals with dress in everyday life.

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