“A person isn’t who they are during the last conversation you had with them – they’re who they’ve been throughout your whole relationship.” (Rainer Maria Rilke)
The dramatic changes in behavior, mood, language use, reasoning ability and physical function that often strike due to Alzheimer’s disease (AD) make the philosophy of the Rilke quote especially hard to maintain as the disease progresses. At the heart of the issue is this: a person with Alzheimer’s disease is the same as a person with any other disease, still a person, regardless of changes in personality and ability.
An Alzheimer’s Patient’s Bill of Rights (Bill of Rights), can help a newly diagnosed person and their family maintain awareness of “personhood,” throughout the progression of the disease, guiding a family’s daily and long-term approach. Virginia Bell and David Troxel, authors of the “The Best Friends Approach to Alzheimer’s Care” created an Alzheimer’s Disease Bill of Rights. Here it is:
- To be informed of one’s diagnosis
- To have appropriate, on-going medical care
- To be productive in work and play for as long as possible
- To be treated like an adult, not like a child
- To have expressed feelings taken seriously
- To be free from psychotropic medications, if possible
- To live in a safe, structured, and predictable environment
- To enjoy meaningful activities that fill each day
- To be outdoors on a regular basis
- To have physical contact, including hugging, caressing, and hold-holding
- To be with individuals who know one’s life story, including cultural and religious traditions
- To be cared for by individuals who are well trained in dementia care
Like our country’s Bill of Rights, this one is a guide, not an unquestioned set of rules. Of course, no caring person would blindly follow Right number six and force a frail older adult to go outdoors regularly in the winter. As for Right number one, sometimes a person will forever resist accepting a diagnosis of Alzheimer’s. In following the philosophy of the Bill of Rights, a family would continue with understanding, supporting their loved one by learning about AD, seeking respite care to avoid caregiver burnout, and structuring routines, activities, and care to their loved one’s evolving needs.
A daughter told me how free she felt when she finally realized something about her mom’s dementia: “I needed to be where she was. Before this epiphany, I tried to encourage and force her out of her dementia. I asked her to remember things, corrected her, and pushed her to live on my terms. We were both frustrated and upset. I lost much of my opportunity to see the world through Mom’s view.”The Bill of Rights is about being where the person with the Alzheimer’s is, and doing the best possible for that person, in their unique situation.
Lee Nyberg seeks to help families and those living with Alzheimer’s through education and her company, Home Care Assistance.