Keeping up Health Promotion Practices in Specialized Day Care Units for People With Dementia

Abstract

Background: Health promotion practices hold promises for elderly individuals' quality of life. This article shows that such practices can be promoted in specialized day care units for individuals with dementia. Method: Group interviews with 8 groups of staff (comprising 24 staff members) in 3 day care units. Results: Rather than referring directly to health promotion practices, the staff-members talked about the importance of regular drinks and meals, as well as exercise such as gym programs, walking, and swimming sessions for the wellbeing of their clients. They also maintained that the pursuit of different individual interests reduced stress both for the individual client and for the respective family. Conclusion: Day care for elderly individuals with dementia can promote individual health practices, in as much as it is based on knowledgeable monitoring of health and well-being. Such health practices strengthen the daycare client's optimal independent function which the staff members regard as a prerequisite for living at home.

Introduction

With worldwide aging of the population, emphasis has been growing on health promotion practices as people grow older. In recent decades, the emphasis has, however, shifted a little from references to compression of morbidity with lifelong vitality ¹ to discuss the well-being and quality of life in older age. ^2–4 A healthy lifestyle is seen as sustaining independence and integrity as people age and may prove to save money for health services in many countries. ² It is also increasingly being recognized that people can experience healthy living and quality of life in spite of various chronic illnesses that may accompany aging. ^4,5 People of all ages are encouraged to take up different practices and habits to support their health and well-being, especially with regard to nutrition, exercise, and inspirational activities. Newsom and his coworkers point out that “health behaviors typically include lifestyle behaviors, such as smoking or exercise, as well as preventive care, such as regular checkups and screening tests (e.g. the Papanicolaou or Pap test), known to have serious health consequences.”^6(p194)

Kim puts forward that “it is necessary for older people to play an active role in maintaining physical and mental health and to optimize their capacity as much as possible until the end of life.”^7(p84) The self-efficacy accompanying intact cognitive function may be a prerequisite for healthy lifestyles, but Lim and her fellow workers propose that social support may be seen as an intermediate stage in a theoretical model of health promotion of the aged individuals. ² Social support in day care units for people with dementia may indeed be seen as an intermediate stage of health promotion, where healthy behaviors can be guided and supported for this group of elderly individuals.

Any kind of dementia certainly undermines people’s health seriously, but health promoting practices may ease the burden of this chronic disease, as of many others. A person with dementia may though require extensive support in order to be able to maintain practices that promote health. Lim and her coworkers refer to social support ² as the interpersonal influence factor on the health promoting behaviors of Korean older women. The theoretical model of these authors shows that health promoting behaviors of older women may be indirectly affected by cognitive–perceptual factors through social support. The theoretical model proceeds from stage 1 (antecedents or cognitive–perceptual factors) through stage 2 (social support) toward the outcome, stage 3 (health promoting behavior). An interesting question is whether this theoretical model could be seen as proceeding in the reverse order from health promoting behavior via social support toward cognitive–perceptual experience of the person with dementia. From this perspective, health promotion practices in specialized day care units may strengthen the cognitive–perceptual capacity of the person with dementia through social support. It should be noted, in this context, that successful attempts of promoting health in early-stage dementia have been made in a 12-week course. ⁸ This course, did indeed, strengthened the cognitive–perceptual capacity of the person with dementia among other measures of psychological well-being. Importantly, evaluation of the course showed that perceived social support emerged as a significant finding.

It is generally accepted that older people see health as a prerequisite for living a good life with increasing age ⁹ ; thus health promoting behaviors for good health in later life may be viewed as fundamental elements of well-being and quality of life for elderly individuals. Nutrition, certainly, plays a key role in health promotion strategies for the elderly individuals. ² But, tasks such as shopping for food and preparing meals, as well as consuming food, may prove difficult for a person with dementia, due either to cognitive impairment or to functional limitations emerging as the disease progresses. ¹⁰ Gerdner and Simpson’s study suggested ¹¹ that the nutritional status of the elderly individuals with dementia or chronic confusion was 1 of the 3 main concerns for caregivers. Dysphagia may also exacerbate the nutritional status of a person with dementia as the illness advances. ¹²

Some kind of training or exercise also plays an important role in health promotion and there is growing evidence that physical training can be beneficial for people with dementia and related cognitive impairments. ^13–15 Various inspirational activities can also enhance health promotion among people with dementia. Different activities are now being recognized as both uplifting and beneficial for this group of older people as well as cognitively stimulating ^16–18 for example music, dance, or other forms of creative work along with different forms of reminiscing.

Bond and Corner ¹⁹ maintain that a paradox remains regarding quality of life of older people and propose that definitions of quality of life should be left for individual actors functioning with agency in their own time and space. The agency of a person with dementia may be severely impaired by the disease process, and their functioning likewise. Naue and Kroll have, indeed, pointed out that “Demented persons have largely been denied opportunities to regard themselves as agents in their own right.”^20(p31) However, one of the goals of specialized day care units for individuals with dementia featuring in this interpretive phenomenological research is to improve the functioning of their clients. ²¹ So this article attempts to show how services that are guided by such a goal draw upon health promotion practices.

Methods

The purpose of this interpretive phenomenological study was to explore collaboration between families and staff in day care units caring for elder individuals with dementia. It should be pointed out that reference to the term collaboration may hinge on the 2 parties' interpretation of the way in which the care in the unit and the care in the home is intertwined. The design of the study constituted 3 parts: a longitudinal study of the family’s experience, group interviews with staff, and participant observation. The premises of the study assume that collaboration between the family and staff depends upon the meaning ascribed to care from the perspectives of both parties. Thus, inquires were done into both family’s and staff’s delineation of their care to capture how the care of the person with dementia can be understood, on one hand in the context of a home and on the other in the context of a day care. This writing focuses on the staff’s interpretation of their care, especially, their emphases on health practices of their clients. Apparently, health promotion practices in the units aimed at making life at home easier for the individual with dementia and her or his close ones. So, in many ways, the staff seemed to collaborate with the family by these means. Other aspects of the study have been or will be reported elsewhere. ²²

Site and Participants

The sites of the study were the 3 dedicated day care units for patients with dementia, operating in Reykjavík (the capital of Iceland) when the study commenced in 2003. The data collection was completed in the spring of 2009, when the last longitudinal interview with a family member was carried out. The study encompassed a sample of family members and 8 groups of staff (3-4 staff members in each group, a total of 24 staff members). Access to the units was granted by permission of the boards of directors of the respective units. The research was then approved by the National Bioethics Committee of Iceland.

Data Collection

This report is based on group interviews with staff conducted during the first year of the study. The group interviews with the staff were complemented with participant observation.

The participant observation of this study has been particularly described. ²² Participant observation is almost always required in interpretive phenomenological research according to Benner ²³ as the observation brings forward the meaning and purpose of actions of the people observed. Benner has also pointed out that a small group interview is “an effective way to set up a familiar communicative context and dialogue.”^23(p108) The group interviews in this study were rooted in the ethnographical approach and were supposed to “have the advantage that they make the interview situation less ‘strange’ for interviewees and thus less of a strain.”^24(p121) Each group interview with a group of staff focused on a particular client that was included in the longitudinal interviews of the family experience of caring for a person with dementia. This was done to focus the interview and aimed at talking about a particular client, as a paradigm of caring for a client with dementia rather than talking about individuals with dementia and their care in general.

The interview guidelines that were developed for the group interviews intended to encourage conversation and sharing of stories among the staff. The group of staff usually consisted of 1 registered nurse (RN) and 2 or 3 nursing assistants and/or practical nurses. All participants received a recruitment letter and signed a consent form at the beginning of the interview. All interviews were audio taped and transcribed in order to generate the text for interpretive analysis.

The researcher discussed with the directors of the centers the best time to conduct the group interview and came to the conclusion that it would be best to carry out the interviews around 11 am, as that was a quiet time in the units and everybody was fairly settled in during that hour. Every staff member who was contacted was ready to participate in the interviews, and all of them spoke openly about the care of the particular individual being addressed during the respective discussion and collaboration with the family. The researcher attempted to elicit each staff member’s perspective regarding these aspects and to facilitate discussion among the staff about their approaches to care in this situation.

Data Analysis

All the transcribed interviews with the staff were read repeatedly to compare them and to evaluate the main emphases in the staff’s talk. The interviews would of course differ depending on the particular client in focus; however, the staff would address in a similar manner all the clients' practices and habits regarding the bodily necessities of the self.

Common to all the interviews was this very clear theme that captured the importance of enhancing the function of each and every client of the units with health promoting activities. But it was also very clear on the staff’s behalf that it was very important to monitor each and every individual very closely to make sure that any health promotion activity suited the 1 person spoken of.

Findings

Knowledgeable monitoring of health and well-being in these day care units places emphasis on health practices of intake of air, fluid, and nutrition, as well as elimination, rest, activity, and personal hygiene that are suited to each individual’s condition, capabilities, preferences, and mood. Access to a geriatrician was an important aspect of the health promotion practices in all the units. The staff or RNs would consult the geriatrician who visited the respective unit every week, if they had some cause for concern or if the close family was worried about some change of behavior or condition.

Health Practices of Intake of Air, Fluid, and Nutrition

The staff would notice whether somebody was short of breath during rest or activity and would try to explain it and detect its origin. They were usually well informed about the client’s health problems other than dementia, such as heart or lung disease and would discuss whether a certain disease might have deteriorated, if any client’s condition was out of the ordinary. Intake of fluid and food or nutrition was closely observed in all the units and all the guests were weighed regularly. A pitcher of water and some glasses were often placed on a central table in each unit, so people could help themselves to a drink, and everybody was also regularly offered a glass of juice or water for example when the clients returned from some outing like a walk or swim.

Meals were a very important part of the daily routine: both preparing for them, eating, and cleaning up afterward. The researcher was, indeed, invited on more than 1 occasion to taste a cake with the afternoon tea that a client or clients had made in cooperation with a staff member or members. One or 2 of the clients would regularly lay the table with 1 staff member, and then everybody would usually sit together at the table during the meal. Most units tried to have at least 1 staff member sitting at each table, but in some cases there was not enough space in the unit, as witnessed in one of the staff interviews:

… we do sit with them at meals—if there is a free space—there are only so many spaces here—sometimes we try to put a chair at the end of the table—we always sit among them—there is always somebody sitting with them—but naturally there is not space for everybody at the table—it depends on the assistance or help needed at the table—if somebody needs help cutting the food—then we have a chair at the end of the table—but we always look out for them to make sure they take something ….

The staff kept a vigilant eye on the clients during the meals, either by sitting at the tables or by standing nearby; sometimes they would prepare a particular individual for a meal by having her or him putting an apron on, then they would make sure that the plates with different items were passed around the table or they would make sure that a person would not get confused by too many items of food in front of her or him. These aspects of care approaches became very clear in the staff’s talk about 1 of their clients, as this example shows:

… you need to cut her food up and put the fork in her hand—she also has a special plate with a lip—so the food doesn’t spill—otherwise everything would be scattered—I also noticed when I sat at her table that she could not handle many things around the plate—it is good to place the glass a bit farther away—but to encourage her to drink all the same—I think it has something to do with her eyesight—but then she only seems to be able to concentrate at one thing at the time—I have used [this approach] pertaining to this disease—just to have only one thing, or as few as possible, around the plate for proper concentration— [otherwise] it starts to disturb her straightaway.

Health Practices of Elimination

The staff would inquire about elimination practices and know about the frequency of toilet visits in the units. Also they could sometimes tell by the state of the underwear how things were going. They often prompted some of their clients to go regularly to the toilet and accompanied others regularly to the toilet to give them a hand with elimination or hygiene after using the toilet—the staff would use different approaches in order to gain the client’s cooperation, as the RN in 1 of the units described in the following case:

… one of our clients whose disease is advanced—quite a lot of symptoms of apraxia—she really needs guidance—she had begun to lose urine—so she needs to go regularly to the toilet—it matters how you approach this client—this practical nurse knows how to do it—she takes her to the swimming pool—and is really good at approaching her—she [the PN] has this way of being cheerful—the woman [the client] is very musical—they dance a lot—maybe they sort of dance into the toilet—it does not work to say—‘so would you like to go to the toilet’—you know—then she [withdraws]—you need to be easygoing towards her—this is an approach that works with her—with others it would not do—there are different things that work ….

Sometimes the staff would institute the use of incontinence pads in the unit and give advice or guidance to the supporting family member about their availability and use. The staff would also place special emphasis on personal hygiene if the client had a problem with elimination and often offered such clients assistance with a shower at least twice a week. However, the staff did not discuss client’s specific elimination patterns in any detail in the interviews, as they seemed uncomfortable doing so.

Health Practices of Rest and Activity

The staff said that they often could tell in the morning, when the people arrived, what kind of a night a client had had. One of the RNs and also a director of one of the centers said she thought it was very important to get a thorough look at clients on their arrival in the unit in the morning in order to evaluate their condition and mood and ask about how the night had been for an individual client.

According to the staff the clients would usually settle in before long in the morning, each at his or her own pace: some would have breakfast, others would just sit and nap for a while in a chair until there was a gathering for some event. Then as everybody had arrived and settled in, the different programs of the day would start. Everybody would gather in one place for a newspaper reading after breakfast, while in another unit the first gathering of all in the morning was the gym session. Shortly after arrival in the morning, there might be a particular gathering, to go for a swim or a walk. People would walk to the swimming pool from one unit, while they go by taxi from another unit. Swimming was not on the program at the third unit, and apparently there was not much interest in swimming among the guests or the staff. But in all the units, everybody would go out for a shorter or a longer walk; some would even take a walk twice a day. The clients would be divided into groups depending on their ability to walk, sometimes there were one or more groups of different stage of tolerance led by a staff member, and the individual might move between them depending on their condition, as one of the RNs explained:

… now this woman always needs to have her hand held—she got lost on one of our walks—then it was decided she would move to another walking group [group number one]—she can walk quite well—you know—so it works well—though one of the staff members thought she walked too slowly for that group and nobody should need their hand held in this walking group [there are many in group number two that like to have their hand held—to feel safe—but this woman could easily get lost from that group].

All the people usually enjoyed sitting down to have a sip of water or juice after the walk, and at the same time the staff purposefully distracted them from napping or resting too intensely except after lunch, when half an hour of rest or sleep was encouraged in all the units. After the rest some kind of action took over and everybody kept busy playing cards, doing some craftwork or enjoying, for example, a performance by a visiting choir or some other event. But of course any kind discomfort or pain could change the individual client’s pattern of rest or activity, as this example shows:

… then her arm was hurting—she has a pain in her upper arm—always—we don’t know why—the arm has been x-rayed—but nothing came out of it—she can only lift [the left arm) that much while she can lift the other one all the way—it has been like that since she was admitted—she was actually worse—it does bother her during the swimming sessions—it bothers her doing all kinds of things, like when she is walking down stairs holding onto the banisters—if her arm pulls back the tiniest bit she absolutely wails—there are some movements—there is no story and nothing to see on the outside [of the arm]—it was decided [by the doctors] that she could keep on having the massage—we did not know—if it was safe—it has improved a bit since she started the massage—but she can’t do any handicrafts—she is actually very good at knitting—does it well—but she has not felt up to it lately because of the pain—we have not been encouraging her to come to the crafts room—we do not do it—when people are like that—I think that she has only been there three times—it was just for the company and participating in the talk with the other ladies.

Health Practices of Personal Hygiene

The staff found it very important to help their clients to look “normal” so they would not be stigmatized because of their condition. They placed a lot of emphasis on personal hygiene for that reason, so the individual could, by means of looking clean, well groomed and nicely dressed, better mask her or his deterioration due to the illness. Indeed, Smith has pointed out that:

Sometimes people are able empathetically to recognize what would shame someone and to help them to “cover.” Sensitive care for the demented may entail a great deal of covering, neither futile nor a waste of time. Rather, it is the deepest form of respect for dignity.^25(p53)

The staff had obviously developed a particular approach to each and every person, but on occasion the clients did not appreciate the staff’s efforts to help them bathe or change their clothes. Usually the staff had found out what kind of approach suited the individual client, by a step-by-step process, though it did not always work out when the activity was set up or intended. In such cases, it was postponed until the individual was in the mood of receiving a helping hand. Regular visits to the swimming pool once or twice a week could make a great difference, as strict hygiene protocols are part of the swimming culture in the country. ²⁶ Swimming is a national sport for people of all ages in Iceland; and from childhood, swimmers are accustomed to washing thoroughly before entering the pool. So the day care clients took for granted the activity of washing themselves before swimming. Also, on these occasions the clients became used to having the staff around them in the showers at the pool, so they did not usually find it all that different, when the staff helped them to shower in the unit, if they did not feel like going to the swimming pool, or their regular visits came to a halt.

As a rule, the staff tried to ensure that everybody bathed twice a week, and sometimes more often if there were elimination problems. Usually the clients were offered some kind of grooming after the bath, and that part of the hygiene did not seem to be problematic at all in any of the units. The women appeared to enjoy having their hair set or nails manicured, and the men too seemed to like to have a good shave and have their nails cut. All the units, however, offered their clients the opportunity of a professional haircut or pedicure at regular intervals: either the professional visited the unit or the guest would be accompanied to a neighborhood salon. The staff members were remarkably aware of how important “the look” could be for their clients, as this excerpt shows:

…she is such a glamour puss—very much so—she likes to be all dolled up—she always wears high heels—hardly ever slippers—she talks about her jewellery— “and I have had this for some time—don’t you think it’s pretty?”—and then she goes on—and she takes really good care of her look—she has a nice haircut and is nicely turned out—she talked a lot about what kind of highlights she was going to have [in her hair]—and then she loves having her nails varnished.

Discussion

All kinds of activity related to both intake, elimination, personal hygiene, exercise and some kind of diversion or inspiration was intertwined with stress management in all the units. A healthy lifestyle appeared to sustain independence and integrity for this group of elderly people as they age, just as it does for others. ² It was also noteworthy in the staff’s discussion that the clients in these units seemed to play a very active role as they participated in these practices, with the guidance and support of the staff; Kim maintains that active role on the elderly individual’s part is necessary in order to optimize the individual’s capacity as they age. ⁷

Naue and Kroll call, indeed, for a greater recognition of the active role that individuals with dementia can play in shaping their lives. ²⁰ Health promotion practices in these day care units were supposed to sustain the active role of an individual with dementia. An active role, supposedly, enhances each person’s functional ability. Such enhancement of the functional ability of the clients was regarded very important in all the units and seemingly affected their respective agency and their quality of life in line with Bond and Corner’s proposal. ¹⁹ Nevertheless, the emphasis on health promotion practices in these units aimed not least at delaying institutionalization while enhancing the well-being of the guests. ²¹ Simultaneously, the transcripts from the interviews showed that the staff members were quite aware that delaying institutionalization would only be a matter of time. But a matter of time, however small, might imply a matter of more quality of life for the individual with dementia, so each and every day counted for that purpose.

Conclusion

Knowledgeable monitoring of health and well-being characterized the way in which the staff encouraged health promotion practices in all the units participating in this research. The staff formed a clear picture of each client’s condition on admission to the unit and had the knowledge and skills to evaluate from 1 day to another how each individual’s condition, capabilities, preferences, and mood affected her or his health promotion practices.

The staff pointed out that a regular weekly access to a geriatrician helped them to upheld health promotion practices for their clients. Such consultation allowed for evaluation of any changes that indicated a need for some kind of medical intervention. All evaluation of changes was carried out in close cooperation with the guest’s supporting family member, who might bring the attention of staff to certain changes. Remarkably, any changes that undermined the agency of the person with dementia were observed as a sign of dwindling capabilities that might eventually lead to a move to a nursing home. Apparently an active role on the behalf of the client with dementia made the individual more receptive to the staff’s support of health practices which in turn enhanced his or her optimal independent function.

The report in this article is limited to the staff member’s perspective in specialized day care units for persons with dementia. Further story of this study intends to tell of the longitudinal interviews with families participating in the study.