Would You Want to Know If You Will Develop Alzheimer’s Disease?

            Identifying early markers of Alzheimer’s disease has long been a goal of research.  Some new developments suggest that it may be possible soon to identify whether someone who is not currently symptomatic is beginning to accumulate clumps of amyloid in the brain.  Would you want to know?

            Paula Span, one of the best writers about aging issues, has an excellent column this week about this issue.  PET scans can identify with some accuracy accumulations of amyloid in the brain.  These scans are expensive, $5000 to $7000 each according to Span, and are not covered by insurance, including Medicare. The Alzheimer’s Association has long advocated that Medicare cover PET scans, but Medicare will not pay for tests that do not lead to therapeutic interventions.  Besides PET scans, a recent article reported that a blood test that examined the ratio of two types of amyloid could fairly accurately predict amyloid in the brain.  It has been possible for a while to test for the genetic marker for at least some cases of late onset Alzheimer’s, the APO E4 allele.  

            But would you want to know?  And what difference would it make for you?

            Of course, if there were a treatment that would slow or entirely prevent Alzheimer’s, it would make sense to know.  But there is no treatment.  

            Would you change your lifestyle, exercising more and eating a healthier diet?  This is something we should all do anyway, because it will help us maintain health and better functioning longer.  Would knowing you were going to get Alzheimer’s disease make a difference?  A recent study suggests that lifestyle offers some protection for people with genetic risk (Lourida et al., 2019).  The difference is small, but encouraging. But maybe some people would go the other direction—if you are going to get Alzheimer’s, you might as well enjoy life to the max now.  To hell with diet and exercise.  

            Span discusses whether knowing one’s risk might lead to developing an advanced care plan, including advance directives and someone you trust to manage your estate if you are no longer capable.  Again, this is something we all should do anyway. 

            Would knowing your risk lead you to make different life decisions?  Would you stop putting off traveling to places you have always wanted to visit or doing things you have always wanted to do?  Again, it would be a good thing to start doing those things anyway.  Judy and I have gotten good at seizing opportunities.  We both feel good now, but we don’t know how long that will be the case.  We have also gotten past the bucket list approach.  We don’t want to go to every exotic place, but instead, we travel to places that call to us in one way or another.  Frankly, the call often is from the food, or to visit with friends.  Would you rather worry about amyloid or search Paris for the best croissant?

            There is one other issue about wanting to know.  Not everyone with accumulations of amyloid develops dementia, and some types of dementia may not involve amyloid at all.    So these tests may indicate increased risk, but not everyone will get the disease.  

            We think it’s important to have a plan.  Rather than worrying about what might happen—something bad will eventually happen—we try to use the opportunity we have to do things that we value and enjoy.  

For Paul Span’s article…

https://www.nytimes.com/2019/08/02/health/alzheimers-brain-scan.html?action=click&module=Discovery&pgtype=Homepage

Lourida, I. et al. (2019). Association of lifestyle and genetic risk with incidence of dementia.  JAMA.  doi: 10.1001/jama.2019.9879.

Getting Dementia Care Right

The view from our bedroom window

            Dementia care is challenging, especially in a group living situation.  The cognitive, behavioral and emotional problems that can occur with dementia make it difficult to reason with persons with dementia, or to get them to follow a daily routine.  They may be fearful, and may not understand why they are in this place and not at home. They can become upset and even strike out.  Despite rhetoric about quality care, most dementia facilities do not rise above mediocrity—providing basic care, but not much else.  They fall back on the excuse that you can’t do much with these people because of their cognitive and behavioral difficulties.  

            

Woodside Place is the exception.  They get care right, and they make it seem natural and expected to provide a high-quality environment and program.

Woodside Place is a dementia care assisted living facility located on the Oakmont campus of Presbyterian SeniorCare in Oakmont, PA.  It was founded about 25 years ago, and was modeled on a facility in England that was also called Woodside Place.  I have visited Woodside Place in Oakmont regularly over the years, often taking colleagues from out of the area there, as well as Penn State students. I visited last week with Yin Liu, a former graduate student of mine now on the faculty at Utah State University.

Yin and I were not disappointed.  We saw care done well in lots of small and large ways.

Woodside Place was built as a dementia care facility with the design suited to persons with memory deficits.  The facility has three residential wings, a large common area with rooms for activities and outdoor gardens, which can be accessed at several points.  Each wing is color-coded to help residents find their own rooms.  The wings have a small kitchen for residents to get snacks, and a dining area. Residents can eat in any dining area in the facility or in their room.  Staff do not rotate around units as is the case in many facilities, but they stay with one unit, so they get to know the residents and the residents get to know them.  

The common areas are spacious.  There are places to sit or gather.  The common areas are quiet—no noise from loud TVs, no intercom or phones ringing.  No loud conversations among staff.  An activity was going on in the big activities room, using a large screen to conduct a cognitive stimulation exercise.  The activity was lively but the noise did not spill over to other areas. 

Residents have their own rooms, an important feature of any care facility but particularly important for persons with dementia.  These rooms are their apartments, and unlike most care facilities, they can close and lock the door.  This gives residents a sense of security—staff or other residents do not invade their space, and they can feel safe.  Regulations require checking on residents during the night, so rather than open the door and waking them up, rooms have a Dutch door.  Staff can unlock the top, look in, and make sure everything is all right. During the day residents sometimes open the top part of the door.  They can see what’s going on around them and have conversations with people who are walking by, but also keep the half door closed to give them their private space.

The biggest challenge in care is how facilities handle behavior problems. We asked the two staff people who were showing us around how they managed these problems.  Their answer revealed their expertise.  They said that first they had to get to know new residents, what their lives were like, what they liked to do.  Answers to why problems occur and to their solution can come out of knowing the person. If the problem persists, they will track when it occurs to determine what might be setting it off.  Then they use trial and error to see what may help. And if one thing doesn’t help, they try something else, until they find a solution.  This is the optimal approach in dementia care, with the underlying belief that every problem has a solution.  No drugs, no anger, no punishment.  This approach takes time, and the staffing level must be sufficient to allow them to have the time to find solutions.  But as the experience at Woodside place shows, it can be done.

One of the ways that facilities get into a struggle with residents is wanting residents to follow a routine—when to eat, sleep, and so on.  Woodside staff recognize that residents may not be able to follow the institution’s routine, and so they make adjustments.  Residents can eat when they want, go to bed when they want, get up when they want, including during the night.  Recently a number of residents were getting up early, which put a strain on the available staff.  So they adjusted the schedule of a staff member so that person started an hour earlier, and could provide the additional help that was needed.  

Woodside probably costs more to run than an average dementia unit.  As a non-profit, Presbyterian SeniorCare is not trying to make 10 or 20% on investment.  But beyond cost, Woodside Place is special because of the commitment to a model that emphasizes good dementia care.  Unlike many places, good care is not empty rhetoric.  Woodside staff and administration know what good care involves and it gets implemented.

We have seen good programs come and go over the years.  When there is a change in leadership or ownership, model programs get changed, often for the worse.  But there has been continuity at Woodside in leadership and commitment to dementia care.  It’s long-running success, over 25 years, shows that good care can be done.

Presbyterian SeniorCare has recently been opening Woodside units at the other long-term care facilities they operate in Western Pennsylvania, and have helped programs outside the area to implement the Woodside model.

Full disclosure:  Since moving to Pittsburgh, I have been a consultant to Presbyterian SeniorCare, but I have not been called upon to consult on Woodside.