In the past few weeks, I’ve had the opportunity to attend some outstanding Alzheimer’s training. I also read two good books about dementia.
In late October, I went to the Alzheimer’s Association Heart of America’s Train the Trainer, Building Creative Caregivers. Last Friday I went to the Mid-Missouri Chapter’s program on genetic studies. No matter how much I learn about Alzheimer’s, I pick up new information at each program I attend and from each book I read.
At the Building Creative Caregivers training session, I received a thick workbook. As I began to read through the details of all the modules, I came across reference to The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxel. The book goes hand in hand with the “Person First” module in the Train the Trainer manual.
I sat on my porch this afternoon reading the book. I found “An Alzheimer’s Disease Bill of Rights” to be a logical set of guidelines. In the detail, for “To be free from psychotropic drugs, if possible” I saw the statement: Hugs are usually better than drugs. I wholeheartedly agree with that statement.
The Best Friends Approach is written with professional caregivers in mind. It is a way to provide care based on meeting the psychological as well as physical needs of a person who has been diagnosed with dementia. Family caregivers know the history and preferences of their loved one, but when professionals treat everyone the same, they are denying our individual natures and preferences.
It is important to minister to the soul and spirit as well as the physical needs when a person faces the challenges of dementia. Bell and Troxel liken Alzheimer’s disease to a long trip in a foreign land where we can’t speak the language, know the customs, or understand how to use the phone.
When caring for a person with dementia we must concentrate on what they can do rather than what they cannot do. Can they still enjoy a walk? A drive? A cup of coffee where they can watch birds gather at a feeder? Jim was a musician and never lost his love of country music. He had a personal tape player with headphones. When the tape ended, Jim had to rely on someone else to turn the tape and play the other side. How easy would it be now to fill an IPod with someone’s favorite music?
At the Mid-Missouri program this week, one of the staff members asked me if I had read Still Alice. She told me she had just finished the book and thought it was excellent. I bought the book from Lisa Genova last March at the Alzheimer’s Association Public Policy Forum. I had heard a lot about the book, but when I realized Genova based the fictional story on her research of early onset Alzheimer’s rather than personal experience, I figured it was another glamorized story about Alzheimer’s with no basis on reality.
I read Still Alice in a few days. Genova makes Alice seem like a real person and you can feel Alice’s confusion and grief as the disease brings an end to her familiar life. The journey for Alice and her family are realistic. The conflicts between love and loss, selfishness and generosity, denial and acceptance have been experienced by millions of families when they realize their loved one cannot be cured.
Yes, the past few weeks have been filled with learning. Last night at support group, we showed “Momentum in Science Part I” from the HBO Alzheimer’s Project. Although I had watched the film before, I learned from it. It was interesting to see the relationship between brain disease and overall health.
Much has been learned about Alzheimer’s disease, but so much of it is still a mystery. As scientists seek effective treatment, we must provide the best care possible for those who have the disease now. With a best friends approach, we can provide person first care to improve quality of life whether a person lives at home or in a long-term care facility.
Hugs are indeed better than drugs and a lot less expensive.