Another way of thinking about Alzheimer’s

Two days ago I finished reading I’m Still Here by John Zeisel. Zeisel is the President and co-founder of Hearthstone Alzheimer Care, which provides “residential treatment environments where people with Alzheimer’s and related disorders can flourish.” I am intrigued by the Hearthstone approach. As it happens, I live not far from a Hearthstone residence, and am hoping to visit sometime this summer. In addition to his book, Zeisel also maintains a blog.

Well, you say, surely every nursing home, assisted living complex, and similar facilities attempt to provide such environments for their residents, where everyone can flourish. Hmm, perhaps, but “flourish” means to thrive and grow, and while I have seen places that provide caring, comfortable environments for those living with Alzheimer’s, I have yet to find such a place where a person with Alzheimer’s is nourished to thrive and grow.

There are two aspects that distinguish Hearthstone from other similar places: providing “assisted living for people with dementia”, and aiming for care that utilizes as little medicine as possible and as much art as possible. In my experience, most assisted living places are for people who do not have dementia or other related cognitive disorders. And most nursing homes utilize medicines to help treat their residents, partially, I suspect, due to convenience because of the high numbers of residents requiring assistance with their daily necessities, and partially because most care-givers are not trained in alternative approaches to dealing with individuals who have Alzheimer’s.

Here is what I wrote in my book journal:

Alzheimer’s stinks. But if someone you know has Alzheimer’s – especially if it’s someone you love – a parent, child or spouse – then I’m Still Here gives you a way to maintain, and perhaps enhance, your relationship with that person. Research and experience have provided the author with an approach to Alzheimer’s that should be shared. He reminds us of the dignity that love and compassion can bring to a person with Alzheimer’s. He reminds us that while some portions of a person are absconding, there are other pathways to knowing them. He reminds us that relationships can change and they can also grow. And he provides some very practical information that can inform our interactions.

Most of all, the author advocates for ways to continue relationships in ways that promote and build upon whatever proceeded the Alzheimer’s. He provides some helpful explanations of what he calls “the Four A’s: Apathy, Anxiety, Agitation, and Aggression” and states that more often than not, “how we define, categorize, respond to, and treat these four behaviors” does “more harm than good” because we mis-respond – we misunderstand what these behaviors represent.

One of the more creative and satisfying sounding treatments Zeisel expounds upon is using art as a means for communicating, for drawing upon the faculties of a person with Alzheimer’s and providing for them a creative outlet and a sense of worth.

I think Zeisel’s ideas warrant giving a copy of his book to families who show up (at a doctor’s office, an Alzheimer’s group, etc) asking either for assistance or a diagnosis or who are simply looking for information. The earlier they can read this book, the better they will be able to understand and care for their loved one.

To borrow a line from Sally Shaywitz, those of us with loved ones who have Alzheimer’s should not be afraid to use the word: Alzheimer’s. And we should find ways to have family conversations sooner, rather than later, being sure to include the person who has dementia. Inclusion, as hard as it may be, is surely better than exclusion, because at some point it will no longer be a choice, and then family care-givers will have to make decisions without the input of the person who it most impacts. How much nicer, I think, if long term care can be planned with all voices being heard. I wish I had known about Hearthstone Alzheimer Care five years ago, when looking for a place for my Dad to live.

At the end of his book, Zeisel provides a number of links for Alzheimer’s and ARTZ related sites:

• The Alzheimer’s Association
• Artists for Alzheimer’s (ARTZ)
• Big Apple Circus
• Bowery Poetry Club
• Hearthstone Alzheimer Care
• John Michael Kohler Art Center
• Tribeca Film Institute