During the focus group sessions, family members mentioned other topics, either in direct response to an issue raised in the moderator's guide (e.g., "has your view of what was important and what is good quality changed over time?") or as a side issue that arose during discussion of specific topics (e.g., the difficulty of knowing what "assisted living" means in reference to a specific facility).
Assisted Living as a Concept: What Does It Mean?
Family members for the most part agreed that assisted living is a concept they like, and it is overwhelmingly preferred to nursing homes. At the same time, they recognized that there was tremendous variability among the places that call themselves "assisted living." Similarly, although some of the family members and their loved ones expressed dread of nursing homes, they often wanted the security, staffing levels, and staff competencies routinely offered by nursing homes.
Dread of Nursing Homes. One of the findings was, in fact, how fearful families and loved ones were of "nursing homes," even though they wanted many of the aspects of care that are routinely provided in many nursing homes and are specifically required by federal law. These features include such elements of quality family members strongly favored, including individualized assessment and care planning, trained nursing assistants or aides, nursing supervision, care that maximizes the functioning of the resident (e.g., cuing, verbal reminders, tasksegmentation), behavior management programs, and environmental security for residents who wander. Thus, one topic the Alzheimer's Association or others may wish to pursue is what, exactly it is that families and elderly so dislike or fear about nursing homes. For those residents who need more care than an assisted living facility provides and for families that have exhausted all personal funds in paying for care, nursing homes are a viable alternative, and research that would indicate how to make the nursing home environment or process of care less dreaded might be useful.
[I knew my parents didn't want to be in a nursing home because] 25 years before they would always say, "I never want to go into a nursing home," and, you know, "Kill me before you send me to a nursing home." (Portland, current)
He'll say, "Oh Sharon [name changed] dear, there's something going around with me, isn't there? It's Alzheimer's, isn't it?" And then you have to say "Yes, daddy." Well, this particular... [facility] has three buildings. He's in the assisted living...[and] there is a nursing facility...which is kind of up the hill...My dad always says, "Oh, Sharon dea, one of these days, I'm going to have to go up on the top of the hill, and I don't want to go." (Northern Virginia)
Difficulty of Knowing What is Meant By "Assisted Living." There are many variations on the assisted living them. Indeed, one of the observations made by family members in nearly every focus group was that they had difficulty selecting facilities, since there was so much variability in what places were like and in the services provided among places that held themselves out as being "assisted living" facilities.
I think one of the real hindrances...is that the term assisted living is almost meaningless because it covers either minimal assistance or it covers the whole spectrum of possibilities. (Cleveland)
It goes from the range of, if you need help turning on the water, that's fine, but if you need help with medication, it's all over. If you need, you know, meals served that's okay, but if you need them brought to your room, you're not assisted living anymore...Each facility hasit's own definition of assisted living. (Boston)
Family Members' Needs
Family members mentioned needing support groups for themselves, needing more consumer information about Alzheimer's disease and its progress, and needing more information about assisted living and other care options. They wanted both information about the options available and about how to make good decisions. In addition, they discussed wanting more advice on how to take medical information and then make decisions about care. Finally, they wanted information on programs that will educate them about the disease, the care options available, and how to use this information in making decisions about the care of loved ones with Alzheimer's and other dementias.
Barriers to Care
During the focus group discussions, family members mentioned several factors they perceived as either barriers to securing assisted living for their loved ones or as barriers to making what they perceived as good decisions. First, in each focus group cost was perceived as a barrier to care. Family members noted that not everyone could afford assisted living. In addition, many expressed concern about exhausting their loved one's funds, the lack of Medicaid coverage for assisted living, and the implications for what would happen to their loved one when private funds were exhausted.
Family members also discussed the limited availability of assisted living facilities, particularly those specializing in the care of persons with Alzheimer's disease, long waiting lists are good facilities, lack of knowledge among some facility operators about Alzheimer's disease and its care implications, and their own lack of knowledge about how to evaluate facilities and, if evaluation criteria are known, how to determine during the selection process whether the facility meets those criteria.