Desired Lifestyle of Older Adults with Dementia Living at Home from Their Perspective and That of Their Families with Support from Care Providers ()
1. Introduction
According to the World Health Organization (WHO), there are over 55 million people currently living with dementia worldwide and there are nearly 10 million new cases every year [1]. In Japan, it is estimated that one in five people will develop dementia in 2025, and it is expected to increase further in the future [2] [3]. Dementia is the first major cause of need for care in Japan, and there is a high need for care for older adults with dementia and their families living at home [4]. In previous surveys on the care for older adults with dementia, while the burden on care providers is occasionally explored, the main focus has been on support for the transition of older adults from facilities to their homes [5], visiting nurses’ care practices for older adults with dementia [6], interventions for reducing the anxiety of care providers in the family [7], and review on care programs for local older adults with dementia in the community [8].
In the case of older adults with dementia, the discussion on the experiences associated with changes in symptoms and lifestyle has only just begun [9] [10] [11]. Older adults with dementia are said to be able to talk about their own past while being in a fluctuating time and space [12]. Despite dementia, they can live to an old age, which is a time to accept death and all of one’s life (including the positive and negative parts), to live with interest in the next generation, and to integrate one’s life [13]. Older adults with dementia have their own will, even if age-related changes and the dementia itself make it difficult to communicate accurately in words. Respect for will is imperative to ensure human dignity. When older adults with dementia find it difficult to live alone without the support of others, the care provider determines how they shall live, which is dependent on how the support from the immediate family. However, understanding how older adults with dementia want to live is critical to having families and care providers respect them as people, respect their will, and support the integration in their life.
However, no studies have focused on how older adults with dementia who live at home want to live, and how families who care for them on a daily basis understand their thoughts and support them. This is critical in helping older adults with dementia live out their old age independently, even if the dementia makes it difficult for them to organize and manage their own lives.
Therefore, this study aims to clarify what kind of life older adults with dementia living at home desire, how families perceive this, and how care providers can support their desired lifestyles.
2. Method
2.1. Participants
The participants in this study of 12 pairs of older adults with dementia using in-home, long-term support or home-visit nursing care offices through the long-term care insurance system, their families, and their care providers (Table 1).
2.2. Procedures
The purpose of the study was explained to the managers of in-home, long-term
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Table 1. Overview of the participants.
Note 1) The degree of independence in daily life of older adults with dementia ranges from Rank I (almost independent) to Rank IV (always requiring care). II and III are classified as a and b, respectively.
care support (Office 1) and home-visit nursing care (Office 2) locations in the Chugoku and Shikoku regions of Japan, and informed consent was obtained for their cooperation in the study. The researchers then contacted the older adults with dementia, their families, and their care providers, and asked for their cooperation directly.
Ethical considerations included verbal explanations to the participants, their families, and care providers about the purpose of the study and the protection of personal information, freedom to decline, disclosure of results and adherence to anonymity, protection of privacy, and no disadvantages to current use services and work evaluations in the absence of cooperation. Interviews were tailored to the circumstances of the individual, family, and care provider. In addition, during the interview, the physically altered conditions of the participants were taken into consideration. This study was conducted with the approval of the Research Ethics Review Board (T17-08) of the affiliated universities.
2.3. Data Collection and Analysis
The study adopted a qualitative descriptive study design. Individual interviews were conducted using a semi-structured method based on an interview guide. Participants were asked how they would like to live based on their past life experiences; families were asked what kind of life they thought the participants desired; and care providers were asked how the participants would like to live and what kind of care they received. Each interview was conducted for approximately 60 minutes. The participants and their families were interviewed at home, and care providers were interviewed at the office where they worked. The interviews were recorded on an IC recorder, and verbatim data was used for analysis. The data collection period was from April 2018 to December 2018.
Initially, I repeatedly read the verbatim interview content to gain a deeper understanding of their narratives. Next, the following questions were asked to each set of respondents: “What is the desired life of older adults with dementia?” “How do family members and care providers perceive the desired life of older adults with dementia?” and “What kind of support are care providers providing?” The responses were then extracted and coded. In addition, the commonality and divergence of the codes extracted from the 12 pairs were considered and categorized.
To ensure rigor in the qualitative research, the content of the interviews was checked with the participants and the results of the analysis were communicated to the care providers to ensure the credibility of the content and the analysis.
3. Results
There were five kinds of lifestyles desired by participants, three lifestyles desired by the families, and four categories of support by care providers which support the lifestyles desired by the older adults with dementia.
3.1. Lifestyles Desired by Older Adults with Dementia (Table 2)
Participants living at home had a sense of accomplishment and fulfillment that they had done their best in their life experiences, both inside and outside their homes. They talked about the life events they had worked so hard to achieve in their lives, and how they felt they were still the same self they were then, and that they continued to have pride. Despite their old age, they continue to live with pride and have strong beliefs and personalities. Although they were aware that the symptoms of dementia would lead to a decrease in their ability to function as usual, the participants wanted to continue doing what they could to live a life of pleasure every day.
In addition, participants wanted to be supported by their children and grandchildren, and elderly couples wanted to help each other while living peacefully with their families. Their responses included the following: “In my daily life, I am aware that the symptoms of dementia make it difficult to establish relationships with others or to go out, but I wanted to go out and live and interact with people” and “Looking back on my life so far and imagining the future, I hope that my casual present daily life would continue, and that I have lived cherishing this time today.”
3.2. Family-Captured Lifestyles of Older Adults with Dementia (Table 3)
Participants’ family members believed that they would continue their own lifestyle (e.g., housework or other habits which they had been doing since their youth), interact with local people, and continue to live in their homes in the future. Families that had been living together before the dementia set in understood the distress of the participants due to the fact that they were not be able to live as they desired because of their symptoms. They believed that as the symptoms progressed, the anguish would pass and the participants would no longer be under distress.
3.3. Support by the Care Providers of Older Adults with Dementia (Table 4)
The participants’ care providers revealed that the participants frequently talked about and took pride in their work and educational background. The care providers conveyed to the participants that they were indeed necessary and respected as people, taking care not to deny their words or behaviors. In addition, the care providers encouraged the older adults under their care to make use of the work and hobbies which they had always done in their lives, ascertained
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Table 2. Desired lifestyle of older adults with dementia living at home.
Note. The alphabet indicates older adults with dementia.
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Table 3. Lifestyle desired by older adults with dementia as perceived by family members.
Note. The alphabet refers to older adults with dementia and their families.
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Table 4. Supporting care providers to assure the desired lifestyle of older adults with dementia.
Note. The alphabet indicates a caregiver for the older adult with dementia.
what was possible for them to do based on their present abilities, and asked them to actively pursue these activities. These care providers also guided others who care for older adults with dementia on what was done and what could be done, and coordinated care activities to ensure their uninterrupted longevity.
The care providers also believed that it was better for older adults with dementia to live with their families, and that familial support is important for the lifestyle desired by older adults to be realized. Care providers were comfortable discussing the families’ feelings, praised their daily care practices, assessed the burden of care, and provided additional care skills. They also checked whether the participants and their families lived peacefully and were satisfied. In addition, the participants anticipated the future course of the care they needed in consideration of the environment in which they could live comfortably with their families and communities. They also communicated and confirmed with their families where and how they would like to be at the end of their lives and were supported in their decisions.
4. Discussion
The participants wanted to continue taking pride their own way of life, live peacefully with their families, and interact with others, while valuing the time they had at present. The participants’ families who had lived with them understood their lifestyles, and their care providers supported these lifestyles. Based on the results of these analyses, we discussed the continued dignity of older adults with dementia and the place where they can be most comfortable without their egos being threatened.
4.1. Continuing Dignity of Older Adults with Dementia
Older adults with dementia wanted to remain proud of their way of life. They used to work for their families, and this work was a part of the brilliant life experience of confronting difficulties, overcoming them, and gaining a sense of accomplishment. They also supported their families through housework. The participants live with the desire to do what they can now, in their unexpected confusion. Family members are familiar with the work and hobbies that these participants have conducted for the family and for self-realization, the beliefs and values they have cherished, and the history of their hardships and pleasures. It has been reported that older adults with dementia deepen their self-affirmation and maintain a rich life with pleasure and a lifelong role in their families [10]. Even if older adults with dementia find it difficult to speak on their own, their families understand their sense of pride. To recognize their pride is to dignify them as a person. Care providers therefore need to listen to the life experiences of older adults with dementia and understand their values and beliefs from them directly and from their families who are familiar with them. Even though older adults with dementia may be incapable of regular movement or may have become increasingly forgetful, they are still able to recognize that they are needed and useful to others through activities that they perceive as something that they can do for their families.
In contrast, older adults with dementia may also give up without trying because they have had experiences of not being able to accomplish tasks or have had negative feelings at the time they wanted to do something. Studies show that exhibiting caring, considering, friendly, and helpful attitudes towards an older adult with dementia shows respect for that person [14]. Care providers should not only focus on what older adults with dementia cannot do, but should draw out their abilities and encourage them to think it possible, based on their past life experiences. In addition, it is important for older adults with dementia to work not only with words but also with the body. By verbalizing and acknowledging what older adults with dementia can do, and by accumulating experiences that make them feel “I can do it,” their self-efficacy will increase. The sense of accomplishment regarding what they have achieved and recognizing that their experience seems to be helpful to others can help them feel worthy and lead to enjoyment in their daily lives. It is also important to share information and connect experiences of achievement and joy among the care services they utilize.
4.2. Comfortable Place for Older Adults with Dementia without Threatening Their Egos
Older adults with dementia want to live peacefully with their families, go out and interact with people, and cherish the time they have together. They feel easily unstable regarding their ego because they recognize time, places, and people differently from the real world due to memory loss and disorientation. In addition, older adults with dementia are said to want to live peacefully in a safe environment with a social support network of people close to them who can be trusted, such as family members and care providers [10]. If an older adult with dementia feels that a particular place is safe, they will not be threatened and will be able to spend life peacefully.
Older adults with dementia have physical locations where they live, psychological locations where they feel they can live, and social locations formed through relationships and roles with others [15]. Participants of this study maintained good relationships with their families and communities, such as couples, parents and children, and neighbors who had lived together for a long period of time. Even though older adults with dementia lose their sense of time, place, and people, there is certainly a human and spatial location where they can feel comfortable without being threatened by anything, which is manifested as living with family with whom they maintain a good relationship. If one can feel at home within their family, they would be able to spend their time peacefully. To facilitate this, it is necessary to support the families who live with them. In Japan, since married couples account for the largest number of households with persons aged 65 or older, the family caregiver is often the elderly spouse. Elderly spouses tend to have a greater burden of nursing care on them [16]. However, if support can be provided to meet the needs of the family care providers, the sense of nursing burden can be reduced [17]. Therefore, to ensure a comfortable place for older adults with dementia, it is important to coordinate care services in order to work out the care that families provide on a daily and yearly basis to provide guidance on individual nursing care skills, provide repeated consultations, and support decision-making while anticipating future progress.
Contrarily, people with dementia are connected to society while controlling themselves based on values and beliefs that they want to be themselves until the end of their lives [18]. They feel lonely due to the reduced opportunities to interact with others owing to the bereavement of neighbors and friends of the same generation as well as the loss of sense of time and place associated with dementia. Cognitive function and living environment are closely related to social participation [19]. People with dementia have been reported to experience a narrowing of living space with progression of symptoms [20]. However, in areas where older adults with dementia have become accustomed to living, there are places where people can interact with nature and participate in society. Therefore, linking older adults with their families and to people in the community may guarantee a comfortable place for them. Furthermore, the involvement of volunteers is expected to have a positive impact on their health [21]. It is important to provide opportunities for older adults with dementia to participate in society together with their families and to help them feel that they are living in close contact with the community.
4.3. Recommendations for Care That Supports the Desired Lifestyles of Older Adults with Dementia
In order to support older adults with dementia, it is important to listen to their past life experiences, recognize their sense of pride, make them feel fulfilled and happy in their living situations by helping them utilize their remaining functions, and share information with other organizations and across various occupations to form connected care practices. In addition, it is important to confirm whether older adults with dementia have places where they can feel comfortable without their egos being threatened, and to support them through social participation together with their families so that they can remain connected to the community.
5. Limitations
The results of this study were based on the analysis of discussions with older adults with dementia who were conversational, had good family relationships, used formal services, and employed care providers consisting mainly of nursing care support specialists. It is therefore necessary to expand and vary the sample size to conduct further analysis in the future.
6. Summary
In this study, we conducted an interview survey of older adults with dementia, their families, and their care providers, and analyzed qualitatively and descriptively the lifestyles desired by the participants and the support of care providers. Older adults with dementia were proud of their life experiences, and hoped to continue doing what they could, live peacefully with their families, go out and interact with others, and live peaceful daily lives. Care providers respected older adults with dementia, elicited what they could do with their current abilities, supported their families, confirmed their satisfaction with life, and helped them make decisions in anticipation of the future. In order to support the lifestyles of older adults with dementia, it is important to ensure that they continue to have dignity as people and that they are safe and secure while living with their families and in communities.
Acknowledgements
We would like to thank the participants, their families, and their care providers for their cooperation in this study.
The study was funded by JP17K00755 of JSPS Institute of Science and Technology.