New Alzheimer's studies point to new care options

Placing headphones
Brooke Smith, recreation therapy manager at Hillview Health Care Center, places headphones on Edna Zeuner so she can listen to music Monday, April 7, 2014. Workers at the Hillview Healthcare Center in La Crosse, Wis. are using iPods to help Alzheimer's patients rekindle long-lost memories through the use of music. The Hillview center is one more than 100 across Wisconsin participating in the Music and Memory program that bring personalized music into the lives of the elderly and sick.
Alex Kolyer / For MPR News

The number of people with the memory-stealing diseases like Alzheimer's is expected to skyrocket as the baby boom generation gets older. The way we care for people with dementia is the subject of some new reports published this week by Minnesota-based researchers. One report from the University of Minnesota suggests nursing homes need to undergo a culture shift in the way they assess and care for Alzheimer's patients. It recommends government policy changes that could encourage that kind of shift.

For Alzheimer's patients, music can be a light in the darkness
What we know now about women and Alzheimer's disease

Alongside that report this week, is separate research showing family caregivers can help keep Alzheimer's patients at home longer if they receive specific targeted support. Doing that on a large scale could save governments billions of dollars in care costs. For more on the non-medical side of Alzheimer's research, we've called upon Dr. Robert Kane, chair in long-term care and aging at the University of Minnesota School of Public Health. The following is an edited transcript of that conversation:

Cathy Wurzer: What's your takeaway of this week's research?

MPR News is Member Supported

What does that mean? The news, analysis and community conversation found here is funded by donations from individuals. Make a gift of any amount today to support this resource for everyone.

Dr. Robert Kane: Well I think there are two important findings. The first one is: there's a great deal we can do to improve the way we care for people with Alzheimer's disease. Certainly within institutions we recognize that we have an epidemic of excessive use of dangerous drugs that are being used to control difficult behaviors. And that we need to find other ways to train staff to deal with these very difficult behaviors. On the other side, we also recognize that the unsung heroes of Alzheimer's disease are the caregivers. They're the ones who really are bearing the huge brunt of the burden of this disease.

And we need to find ways to provide them with better training too. I mean, I think of the caregivers as sort of the soldiers out on the battle lines and what they don't want are inspirational talks from their generals. What they want is better ammunition and better guns, and we need to give the caregivers better intellectual equipment to teach them how to deal with these difficult situations very much the same way we need to teach the nursing home staff.

Wurzer: You know, part of this goes to the New York model for Alzheimer's caregivers that was studied, and Minnesota's efforts to replicate the program. It seems to indicate big savings for government. But, what about the caregivers? No matter how you slice it, Alzheimers as you know is a very expensive disease. Offering counseling is fine, but caregivers are still shouldering a huge financial responsibility that doesn't seem to be addressed in this model.

Kane: No, the model simply says that the caregivers can be taught ways to deal with the disease that will reduce their emotional burden and basically keep them from burning out longer. And I think that model needs to be looked at very carefully because the results that were used to plot the savings are a little over-optimistic. But that being said, the basic message of the model is that it does help caregivers do a better job caring for that.

The costs of the disease are basically two types, I mean, one is the direct financial cost of the disease which are largely the cost borne by putting people into institutions, and those are borne in part by families and a large measure by the government through Medicaid. The other cost and the emotional and physical cost: caregiving basically takes a huge toll on the caregiver. And the rate of depression and the rate of chronic illness is much higher among caregivers for people with Alzheimer's than it is for the general population of the same age.

Wurzer: The sort of support for families right now, is there a good way to get that kind of help to keep you from burning out?

Kane: There are things that are available. The Alzheimer's Association has been providing a lot of good support both in terms of organizing caregiver informational sessions, and putting people in touch with resources over the web. But the kinds of programs that were developed in New York and replicated here are still very rare.

Wurzer: You know, some places are focusing on being dementia-friendly communities. And really this is a model that's been developed in Europe for the most part. Can that help in this country as well?

Kane: Oh I think this is one of the exciting things that's happening. And there was a program here in Minnesota called Act on Alzheimer's Disease which is developing these dementia-friendly communities and reaching out to a variety of sectors and getting the communities activated about understanding more about Alzheimer's disease and being proactive in trying to do things to make them in general more supportive. And I think this is a phenomenally potentially positive direction that we ought to be moving, and testing this concept here in Minnesota and then taking it across a larger area I think is going to be a big step in improving Alzheimer's care.

Wurzer: Is there a move from trying to cure Alzheimer's and other dementias to trying to better manage the disease then?

Kane: This has always been a very interesting thing. I've sat on national Alzheimer's advisory boards for the government, and made up of both researchers and people interested in the care side. And every year, the researchers come in saying, "We're just on the verge of a major breakthrough," and get very excited. And they come back the next year, and that breakthrough didn't work, but they have a new one, and there's a huge amount of enthusiasm.

The caregivers' representatives really see this as an ongoing, tough slogging struggle, and are never quite as enthusiastic. And so resources tend to go to the optimistic side. I think if we could come up with a major breakthrough and find some kind of effective treatment for Alzheimer's disease, it would be phenomenal. And someday we may do that. But it seems to me over the next decade, we're still going to be struggling with how to really meet the demands of this disease, and we need to shift some of our attention and our resources to helping people deal with this. I mean, we've got to start supporting the caregivers, or we're going to discover, that you know, we're going to have to put all these people on public funds, and it will bankrupt our country.

Wurzer: With the focus keeping these folks in their homes for a longer period of time?

Kane: Exactly. I mean if we don't do that, then we're going to drive up the cost of long-term care higher than we can come close to affording.

Wurzer: Give us some examples of help that can delay a patient going into a care facility.

Kane: Well, I mean, basically, what we need to do is to teach the caregivers strategies to deal with some of the frustrating behaviors that we encounter with Alzheimer's patients. So for example, Alzheimer's patients may have what we call rage reactions, and they overreact to various kinds of stimuli, the tendency is to sort of deal with these behaviors by saying, "Well, we'll sedate these people in order to control their behaviors and make it more tolerable."

The alternative is to teach caregivers to be aware of triggers that would set off these behaviors, or to teach them behavioral responses that would distract the person or basically calm them down, so that neither the person, nor the caregiver has to suffer all the difficulties associated with these kinds of rage reactions.

Wurzer: Finally, Professor Kane, what are some of the unanswered questions that you want to have addressed when you see this new research?

Kane: Well, I think the first one is, A) does it make life better for the person with Alzheimer's disease? And, B) Does it make life better for the caregiver? And can we actually see extended care giving as a result of all this? I mean, right now, the study that came out, made some large extrapolations about the benefits and how that would keep people out of the nursing homes. It's not different, in many ways, from the studies that have been made about how we could extend people's time out of nursing homes like giving them these very unsatisfying Alzheimer's drugs.

And it turns out that reality just hasn't really been borne out. And the hope is that these extrapolations will actually work in practice, and we will see extended periods of people being treated at home, without taking a huge toll on the caregiver. I mean the real thing we want to do here is avoid exploiting caregivers any more than they are already being exploited.