Catherine Hawes, Angela Greene, Merry Wood, and Cynthia Woodsong
Research Triangle Institute
This report was prepared under contracts #HHS-100-94-0024 and #HHS-100-98-0013 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and the Research Triangle Institute. Additional funding was provided by American Association of Retired Persons, the Administration on Aging (grant #90AM0698101), the National Institute on Aging, and the Alzheimers Association. For additional information about this subject, you can visit the DALTCP home page at http://aspe.hhs.gov/office_specific/daltcp.cfm or contact the ASPE Project Officer, Gavin Kennedy, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W. , Washington , D.C. 20201 . His e-mail address is: Gavin.Kennedy@hhs.gov.
This report was distributed originally by the Alzheimer's Association. The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.
Assisted living facilities are a rapidly expanding source of supportive housing with services that are increasingly being marketed as a source of long-term care for people with Alzheimer's disease and other dementias. In the view of many, such facilities represent a promising new philosophy and model of long-term care, one that blurs the sharp and invidious distinction between nursing homes and community-based long-term care and reduces the chasm between receiving long-term care in one's own home and an institution because of their emphasis on consumer-directed care.
For families with a loved one who has Alzheimer's disease or other dementia, assisted living facilities hold out significant promise.First, assisted living facilities are thought to provide oversight, supervision, and assistance with personal care for persons with cognitive impairment but to do so in a less regimented and more "normal" or homelike setting than is found in many nursing homes. Thus, residents may live in apartments or rooms in which they have their own personal furniture and other possessions and which look less like a traditional health care facility. Second, assisted living facilities may provide a more appropriate level of care than a nursing home would for persons with cognitive impairment who are still without significant limitations in the activities of daily living (ADLs). Thus, for example, elders who need help with medications, supervision for safety, and help with only bathing and dressing may be more appropriately cared for in assisted living facilities than in nursing homes which typically house residents who have greater levels of ADL limitations and who need daily nursing care or oversight. Third, assisted living facilities provide an environment in which family members could live with the loved one who requires more care and supervision than the family member could reasonably provide in their own homes. Finally, many assisted living facilities offer families the possibility that their loved one can "age in place." Thus, families often expect that the facilities will adjust their care patterns and service provision to meet the changing needs of the loved one with Alzheimer's or another dementia.
Despite this growing interest in and use of assisted living, relatively little is known about the role and performance of assisted living facilities and the degree to which they represent a viable option for family members and elders with dementia. In order to facilitate more effective studies of quality of care in assisted living facilities and to generate information that will help families and elders make more informed choices, the Alzheimer's Association authorized a study by Research Triangle Institute (RTI) of how family members define quality when a loved one with dementia is in an assisted living facility. In the Executive Summary, we summarize the major study findings. In the full paper that follows, we report greater detail on the study methods and provide more quotes from family members that illustrate the main points they made about what "quality" is in assisted living.
The report describes the implementation and findings of six focus groups conducted for the Alzheimer's Association. The focus groups consisted of family members of persons with dementia who were living in or had recently been discharged from an assisted living facility. Our goal in convening these groups was to use the information provided by family members to help define quality in assisted living from the consumer's perspective. Specifically, we wanted family members to share their experiences and insights about assisted living and quality. Using that information, we plan to generate a series of quality measures that will be used in a larger study of assisted living.
The focus group method, one well-known qualitative approach to collecting data, seemed best suited to our analytic needs. Focus groups were used in this project because of their ability to provide insight into family members' experiences and feelings, the group dynamics around quality and care issues, and social norms about caregiving for persons with dementia. Further, they allowed us to elicit feedback from participants about specific program features or elements of quality they might mention. Finally, as suggested by their widespread use in market research, focus groups are enormously effective in helping determine what a particular population wants or might like to have. This is precisely the situation that obtained in the Alzheimer's Association study.
We felt that it was appropriate to ask families to help us define quality for persons with dementia for several reasons. Family members are often regarded as the most appropriate informant about quality issues for persons who are unable (or presumed unable) to provide direct information about their care. While there is evidence which suggests family members' views about what is most important may differ from that of the direct care recipients, there is also recognition of the validity of family views and opinions.
First, for persons with cognitive impairment, families have often provided care themselves and have knowledge about the challenges involved and what it takes to provide adequate care. Thus, they have a practical knowledge base for their opinions.
Second, they typically make key care decisions for relatives with cognitive impairment, including placement decisions. Thus, their views of what ishigh or low quality helps determine which assisted living facility is selected for someone with dementia.
Third, they are often in a position to observe both direct care provision and also the consequences of care. Thus, they have relevant information.
Finally, most family members retain ties of affection and concern to the relative in a facility. Thus, they are typically regarded as a legitimate informant about the quality of the loved one's care.
Given these factors, we felt that family members' view about assisted living and quality were a valid starting point for developing improved quality measures. Thus, we conducted six focus group sessions with family members in five sites:
- Chicago, Illinois
- Northern Virginia
- Cleveland, Ohio
- Boston, Massachusetts
- Portland, Oregon
Participants were recruited by the local chapters of the Alzheimer's Associations, who also provided substantial additional assistance in setting up the meetings, communicating with participants, and making local arrangements, such as having a light supper catered for participants before the focus group sessions. They also helped RTI staff by reviewing and commenting on the proposed study protocols, the recruitment materials, and the moderator guidelines used to structure the focus group discussion.
Each focus group consisted of 6-8 family members and lasted approximately two hours. Staff leading the focus groups included a moderator and a note-taker. The moderator led the discussion, using a guide and series of supplemental "probes" to structure the group discussion. With the consent of the participants, the sessions were tape-recorded. In addition, we asked participants to complete a short survey that provided basic demographic and service use information about them and their loved one in an assisted living facility. We also used "flip charts" to foster discussion and record key issues or topics mentioned by the participants about key elements of quality. The result for each group was a 2-3 page list of elements of quality, from the families' perspective. At the end of the session, the moderator asked the participants to review the issues they identified as key to good quality in assisted living and to use round colored stickers ("dots") to indicate the two items or ideas they felt were the most important elements of quality.
The transcribed tapes were coded into major domains and sub-categories of topics or issues that were raised by the family members. Thus, we had three sets of data to analyze: the brief survey of participants, the transcribed tapes as coded, and the "dot" votes on which issues were most important. For the "dot votes," we simply tallied the results. For the survey, we calculated the proportion of respondents who choose each response for each question. The coded taped transcripts were entered into a text-oriented data base, AskSAM. We then used the software to sort the data by codes, with cross-referencing of text having multiple codes, and organized each coded comment into major domains and, within these, into major sub-categories. The resulting data were then presented by domain and sub-categories and analyzed for their content and meaning. The following section summarizes the key results.
In this section, we describe the characteristics of the participants, their views on key elements of quality, and their "votes" on which aspects of quality are the most important.
Characteristics of the Focus Group Participants. The focus group participants were overwhelmingly women, Caucasian, and children of the loved one with dementia who was living in an assisted living facility. We also asked participants for some information about their loved one and the facility in which they resided. The survey showed that the range of monthly charges was from $1,400 to $5,000, with an average monthly charge of $2,930 per month by the assisted living facilities. This range and average rate was probably lower than one might find in a study that did not include Oregon, which provides Medicaid funding for the "service" component of assisted living charges. Thus, as might be expected, few of the elders residing in assisted living facilities were poor. More than 98 percent had annual incomes of more than $5,000; 95 percent had annual incomes higher than $9,000; 67 percent had incomes above $14,000 per year; and 39 percent had incomes greater than $25,000 per year. Given this, it is not surprising that most family members were providing emotional and physical support rather than financial support to the loved one in assisted living (i.e., only 11 percent of families provided financial support). We also found that most families and elders with dementia (75 percent) had some prior experience receiving long-term care services, while nearly one-third of the loved ones with dementia had been in another assisted living facility before the current facility.
We also asked a few questions about the loved one's experience in assisted living. We found that 61 percent of the loved ones resided in a private room or apartment; five percent in another arrangements, such as a studio apartment; and 34 percent were living in a shared room (semi-private). The average time the loved one had been in the current assisted living facility was nearly two years (i.e., 21 months). Finally, we found that family members were about evenly divided among those who expected their family member to be able to "age-in-place" and remain in the current facility indefinitely (54 percent) and those who expected that their loved one would eventually need to be moved to receive the level of care they would require (46 percent).
What Family Members Say About Quality. In this section, we present the specific results of the focus group discussions on the meaning of quality in assisted living. We have grouped these into four major topic areas identified by family members as important. These are: (1) facility staffing; (2) services; (3) environmental features; and (4) more general facility operational policies and practices.
Facility Staffing. In their discussion of quality, family members felt strongly about the key role played by staff. Within this general domain, they discussed what quality was, from their perspective, with reference to seven topic area or sub-categories: (1) staffing type and level; (2) training; (3) knowledge (particularly care of persons with dementia); (4) attitude; (5) communication with the resident and family; (6) turnover; and (7) continuity. In the "dot voting" by participants, family members most frequently cited aspects of staffing as the most important quality domain in assisted living (28 of 111 votes). Communication (21 of 111 votes) with families and respect for residents (13 of 111), topics that were also discussed in relation to staffing, were rated as the second and their most important elements of quality. Thus, family members overwhelmingly identified the aspects of care discussed in this section as the core of what good care is in their view, with these elements gaining half of all the citations or "votes."
Staffing Level and Staff Qualifications. The staff-to-resident ratio was brought up at each focus group, with high ratios being of greater importance as the disease advanced. Some family members also felt that it was important that the aides were certified because of the training and knowledge requirements associated with certification, and some wanted oversight or supervision by a licensed nurse, particularly if their loved one had health problems or as the loved one became more functionally impaired.
Training. Across all focus groups, family members reported that training in Alzheimer's disease was very important for the direct care staff.
Attitude. The major themes on the issue of attitude isthat family members wanted staff to deal with the residents as individuals and treat them with kindness, respect, tolerance, and affection.
Communication. Family members wanted facility staff to communicate with them about their loved one (how they were doing on a particular day, about any accident or change in health status, etc.) and to be receptive to feedback from family members. Some also felt that written documentation was essential. In addition, they wanted good communication between staff and the resident, that is at a level appropriate to the resident's expressive and receptive communication status and in English.
Staff Turnover and Continuity of Care. A low turnover rate and continuity of staff (e.g., permanent aide assignment) were brought up at the majority of the focus groups as important prerequisites to and indicators of quality in an assisted living facility, particularly for care of persons with memory impairment.
Shared Sense of Responsibility and of Community Responsibility Among Staff. Family members asserted that it was a sign of a good facility when the staff interacted well with each other and had a sense of shared responsibility. They sought staff who all cared about the welfare of the residents, not one in which people just performed discrete tasks. One family member referred to this concept as "it takes a village..."
The Importance of Staff Levels, Knowledge and Attitudes
I would take a really kind, loving care provider over how the place looked, smelled, anything." (Northern Virginia family member)
I would place a higher priority [on staffing ratios]...at this point in time than I did earlier on. (Northern Virginia family member)
[The] "it takes a village thing" is clearly something to think about when you walk into these Alzheimer's assisted living [facilities]. Is the guy who scrubs the floor willing to catch the [wandering] person that just went out the door? (Chicago family member)
Of course, at the same time, she needs all of this [care and redirecting] to be done with a certain amount of respect for her as a person and not as if she's a child. (Chicago family member)
The staff gives her the time and listens to her, you know, and that's real affirming for her even if her logic is messed up, the fact that someone will sit and listen to her. (Chicago family member)
You know, [you want] a sense of the staff, some sense that they love these people,... that they view your person and the other residents as individuals and value them. I think eye contact, a lot of affection, hugging, physical touching...That's one of the reasons I chose where my mom is, because I know the staff....Everyone knows everybody, and they would always stop in the ball and put their arm around them [residents] or rub their back....To me that indicated they really know these people and ...really care about them. But they're also preserving dignity, and this is important to me. (Cleveland family member)
A respect issue to me is respecting the level that they are at. For example, when...[a resident] is pretty high functioning, I wouldn't want people to be talking to them in a way they would when they are not so high functioning...that in...activities...[and] also personal interactions that they be respectful of the stage of the disease. (Cleveland family member)
Services. Family members also felt strongly that the type of services provided and the manner in which they were provided were critical elements of quality. They specifically discussed seven topics within the "service" domain: (1) activities; (2) physical assistance; (3) Alzheimer's disease-specific services; (4) medications; (5) food; (6) transportation and other services; and (7) assessment and care planning. Across all the focus groups and discussion of various types of services, the underlying theme was the importance of having services that were targeted and appropriate to the individual needs, preferences, and strengths of the loved one with Alzheimer's or other dementia. What family members consistently sought was to have activities and services provided in a manner that helped the loved one maintain the highest possible level of physical, cognitive, and social functioning. In addition, several family members spoke of the importance of assessment of the loved one's customary routines, behaviors, preferences, and needs and an individualized plan of care or services.
Activities. The need and importance of activities, and the impact of activities on the loved one's well-being was spoken about at every focus group. Indeed, the growing isolation of loved ones with Alzheimer's or another dementia who were living at home was cited as a major reason that family members sought out an assisted living facility. In addition, they spoke of their perception that the activities need to be specifically adapted for persons with Alzheimer's disease, with the goal of meeting social and therapeutic needs.
Personal Care/Alzheimer's Specific Care. Four basic themes emerged. First, family members wanted the appropriate level of services and personal care provided at each stage of the loved one's illness. Second, family members wanted facilities to recognize the impact of dementia when evaluating residents' needs for assistance, particularly among residents who appear physically intact and able to perform ADLs but who are memory-impaired. Monitoring, supervision, and cuing were cited as critical by family members. Third, family members want personal care performed in a way that maximizes the loved one's function and helps maintain it. Finally, many family members care very much about the assistance loved ones receive with bathing, dressing, and grooming. Cleanliness was especially important.
Medication Supervision. Family members wanted staff to be sensitive to the impact of dementia on loved ones' needs for supervision which included follow-up to make sure the resident has taken the medication, monitoring for adverse effects, and being sensitive to behavioral indicators of problems (e.g., pain, constipation).
Meals/Food. Family members wanted the food to be attractively prepared and presented, tasty, and served in appropriate amounts. They also liked attractive dining rooms. In addition, they wanted the facility to recognize the deficits associated with dementia. For example, they wanted staff to monitor the amount of food that their loved one actually ate to prevent unintended weight loss or gain. Also, some argued that it was important to determine whether a dietician and special diets were available.
Transportation & Other Ancillary Services. Family members wanted transportation for social outings and to health care appointments. They also mentioned availability of other key services (e.g. hairdresser/barber, social worker, and health care providers (e.g., dentist, podiatrist, physician).
Assessment and Individualized Care Planning. Many participants spoke of the importance of written records as a mechanism for recognizing changing needs, planning a resident's care, and communicating vital information to and from the family.
Facility Environmental Features. In terms of the general space, family members wanted safety, with particular emphasis on the special safety needs for persons with dementia. In addition, families wanted their loved ones to have access to a pleasant and safe outside area. Also, they wanted sufficient space for a range of activities. In addition, many family members preferred single-story buildings and emphasized the importance of avoiding either room or general facility lay-out that isolated residents. Further, they mentioned the importance of having an "Alzheimer's-friendly" environment, with safety for persons who wander, visual cues for persons with memory-impairment, good lighting, and so on. Finally, they discussed the importance of residents' personal space. Cleanliness, making the setting homelike, and allowing residents to bring their own furniture were cited as vital.
Meaningful Activities and Alzheimer's-Friendly Service Provision
They asked what kinds of things my mother did...so they could provide those activities for her...Or [they would] discuss with her [what] she wanted to do...She likes to sew and always did, so now they let her darn socks and things. (Boston family member)
There is a difference between keeping people busy -- entertaining people -- and having a really clearly defined therapeutic activity program that actually supports their remaining skills and encourages a certain sense of their independence and promotes a certain sense of self-esteem. (Chicago family member)
If you give her the toothbrush, help her put the toothpaste on, and show her the action, she can figure out that she needs to brush her teeth. But you can't just say go brush your teeth. She needs to be cued to understand. (Chicago family member)
And, like I said...it's important for me that he's clean, that he has on clean clothes. That would be more important to me than the quality of the food. (Northern Virginia family member)
She will put on my mom's make-up, and they will do her hair, and they will pick her out an outfit and it matches--it's how I like seeing my mother. (Chicago family member)
They hand her this little tiny cup with pills in it and say take your medicine, and she very calmly puts it in her purse or... - I find them everywhere. (Cleveland family member)
There were no medication aides on this...unit on the weekends or at night. It was very, very frustrating to me...[because] my mother was on 24-hour a day pain meds." (Portland family member)
One of the things I looked for was excellent food. I arrived at three different meal times, purposely unannounced. (Portland family member)
Something we were looking for was that...residents could go out in the van and just have a drive..We have to work for a living...so it was important to us, because my dad loves to get out. (Northern Virginia family member)
The whole point is, do they offer a full comprehensive health care package? I mean, do they make a dentist available to your loved one?...a podiatrist?...doctor? (Northern Virginia family member)
I think that's a very important consideration...[having] structured and timely and frequent evaluation, with the facility, with the [direct staff] caregiver, with the family -- concerning the person. I don't see that...[in the is facility], but I think that's...important. (Cleveland family member)
Change Over Time in Views of What Is Important. Throughout the discussion of what they thought was good quality, family members noted that over time, either their perceptions of what quality wasor the relative importance they placed on various issues changed. Part of the change was associated with their becoming more expert about what actually matters in the day-to-day lives of residents with dementia. But the major factor in altering family members' perceptions of what factors were most important seemed to be changes in the loved one's condition and care needs, which shifted family member's views to focus more squarely on care issues. These issues also played out in the area of the facility environment, both the public and private spaces, in which safety and services appear to become more critical than physical amenities.
Safety is the first thing. (Northern Virginia family member)
An environment that has been adapted to provide for [residents with] dementia. (Chicago family member)
They have an enclosed open area, which is also really nice..It's like an enclosed patio. It's a real plus....They've had some cookouts there. That's where they had the birthday party in May. They have tomato plants and flowers, and they have a path to stroll around...The exercise bike is out on the patio now in the summer time. (Boston family member)
One of the things that I don't think works well...is multiple floors. I would not choose that again. (Boston family member)
Avoid a [facility] lay-out that isolates residents. (Northern Virginia family member)
You have someone with Alzheimer's, and you want to place them in a unit, then you need to know that this unit is for Alzheimer's. [That they] have the facility constructed or at least modified to accommodate Alzheimer's...It's not just putting a corridor [of rooms in] and saying "This is for Alzheimer's." (Cleveland family member)
I would tell [a friend], use their noses...I have a very sensitive nose, and smells tell me cleanliness. (Boston family member)
The [furniture] arrangement is exactly like her room arrangement at home, if you came in the back door. At first, she was confused about that, and I told her, "It's just like at home, if you came in the back door." And at that time, she was still with it enough that she caught on, and [disorientation]...hasn't been a problem since then. (Portland family member)
The first place I was at was really nice. It was clean; it was new. It was your own furniture, the whole nine yards. I mean, it looked like...a hotel. The place he is now is very institutional. I mean he doesn't have his own bed. I brought -- for me -- in his dresser and a recliner chair, which he no longer uses because he's in...bed all the time. I would take a really kind, loving care provider over how the place looked, smelled, anything. (Northern Virginia family member)
I wanted to keep my mom in the surroundings of her own apartment, and I would go over there and we'd site and visit in the living room. And I would make lunch...I had buried my head, as I'm sure some people do, because it was what I wanted for my mother. It was not what my mother needed for herself. (Chicago family member)
Facility Policies. Family members discussed several other topics that related more generally to facility policies and, to some degree, to public policies. First, there was considerable comment about whether family members expected their loved one to be able to stay indefinitely in assisted living or "age-in-place." While family members weredivided on the issue of whether the loved one with dementia would be able to stay and receive more services as needs increase, the bulk of comments during the focus groups came from family members whose experience suggested the difficulties they had experienced. These difficulties centered on ensuring adequate care and experiencing increased costs. Second, expressions of concern about cost and how long families would be able to support the cost of assisted living were common across all focus groups. In addition, some family members reported difficulty in estimating monthly costs because of (a) unexpected costs for some services and (b) cost increases associated with increased level of care that were poorly understood by some family members. Finally, family members discussed the desirability of having separate units for persons with Alzheimer's or other dementias and of having multiple levels of care in an assisted living facility or having a facility be part of a multi-level campus.
Which Aspects of Quality Matter Most: Results of Family Members' Votes. As noted, we asked each of the focus group participants to review the list of topics and issues the members had identified as key quality components and "vote" for the two the family member considered the most important by planning "sticker dots" next to the statement to topics. Members of five of the six groups did so. (One group refused, with members saying that what was most important varied over time and across family members. Moreover, they argued that all the topics they listed were an essential part of a high quality facility.) Among those participants who "dot voted," issues related to staffing received the most votes (25 percent). Related topics of communication with families (19 percent of the votes) and an individualized approach to resident's strengths, preferences and needs (12 percent) ranked, respectively, second and third. Combined, these aspects of staff attitude and caregiving practices garnered 56 percent of the votes for the most important aspects of quality. Characteristics of the environment -- safety, security, and homelike environment garnered a total of 21 votes (19 percent of the votes). Family members also rated various aspects of care as important (activities, medical care, protective oversight, medication supervision, referrals, and hands-on physical care), with this domain receiving a total of 15 percent of the votes. When combined with individualized approaches to resident care, these care/service aspects account for approximately 27 percent of the votes.
My mother is 81, and she's been in her present place for four years...Mother walked in and will not walk out, and they agreed to take care of her through the end. (Portland family member)
We knew up front [this facility]...was going to be able to provide that kind of care [aging in place]...That's their philosophy...So that the hope is that unless they really are not ambulatory that they can stay there until they die and won't have to go into nursing home care. We certainly pay a premium for these additional services. It's not part of the basic assisted living. (Boston family member)
There is no way. An assisted living facility is going to do certain services, and they're going to go so far and that's it. When my father got sick and went into a hospital the doctor said, "I cannot release him to go back there...He needs much more care than they are going to be able to give."....I think assisted living is great, but the families need to recognize earlier than I did when it's no longer appropriate. (Portland family member of discharged resident)
When they say they can handle incontinence, you need to know what that means... [They may mean]...if they are incontinent [and] can take care of it themselves, wear the appropriate thing, do their own laundry if there's problems with wetting the bed every night. You know, staff will do one laundry per week. They'll change the bed once a week. And so one lady had to...[move] because she couldn't do her own [sheets]. (Portland family member)
You know, that's why I like the idea of...[multiple] levels within the same facility that progresses with the disease...because it's very difficult [to move] them once they're in a facility...I wasn't sure how I was going to accomplish it. (Northern Virginia family member)
I mean, everybody's going to run out of money, you know, and then what? (Chicago family member)
Affordability has to be kind of up there too. I mean, you look for different things. You look for obviously the most you can that you can afford, but if you can't afford beyond that, you have to make certain compromises. (Northern Virginia family member)
Some...services [podiatrist, haircuts, incontinence supplies] are offered at a cost, and some of them are really expensive. I think you need to ask what are your services, and get a whole list of 25 services. Some of them have a flat fee, and some charge you for every little thing...But mostly they have a list of services available for level two or level three. But you need to know all this ahead of time. (Portland family member)
Hidden costs and the different costs increasing...there are some cockamamie concepts in terms of...what you pay...and its very hard to get a straight answer....If they need another level of care, whatever that means at that place, your cost just goes up, goes up 20 times. (Chicago family member)
The only thing that really...bothered me or I had questions about was that it seemed like she was six months in one [level of care and price category] and then the price went up. And she was in six months in another, and then the price went up. (Portland family member of discharge resident)