The medical director of the hospice where I volunteer gave a lunchtime presentation on dementia.
An interesting stat she shared was 45% of people 85 or older will show symptoms of dementia. With longer life spans, we’re going to be dealing with more dementia.
The mechanisms for the various types of dementia are not well understood but she cited the following risk factors:
- Heart disease
- Alcohol use
- Family History of Dementia
Like most of us, I have all-of-the-above in my family tree. If I live long enough then it’s likely that I’m going to bump into dementia.
What to do?
- Consistency and routine in daily living
- Physical and mental stimulation – stay engaged in your family, in your community, consider part time work
- Safety – ID bracelets, honest discussions about driving
- Reminders & Cues – at 45 I have a system in place to manage my days – if you are used to subcontracting all your admin then consider bringing it back in-house before you become part of the elder elderly.
With my grandparents, we used atomic clocks (automatically set for time, day of week, date, month) to help them keep track. Towards the end, I ran my grandmother’s calendar and would handle arrangements for key appointments. They were both in assisted living and my grandmother commented that she would have moved in earlier if it wasn’t for her reluctance to ask for help.
There was an excellent question from the audience… Do my visits have any impact? The doc made the point that the impact of a visit might be not seen until later – when the patient is happier, more content. Don’t assume that low, or no, response means that you’re having no impact.
In my own family, the anticipation of a visit was very positive. I went as far as planning a series of rotating visits more than a year in advance. Each elder needs a champion to marshall caregiving resources.
Likewise, with demented patients, don’t assume that negative behaviors are disease related – the patient could be acting out in response to pain, lack of stimulation or excessive stimulation.
Interesting point for older athletes – the body’s thirst, and hunger, mechanisms dull with age (as well as due to dementia).
The doc shared that artificial feeding of demented patients doesn’t prolong life and changes the nature of death – this is due to complications associated with tube feeding.
The thought of losing one’s mind is terrifying and the topic of assisted suicide came up. We didn’t have time to explore that issue, but it’s going to be on the 2015 ballot in Colorado.
Given dementia rates in my family, it strikes me as more productive to create a care plan, rather than relying on a quick death, or euthanasia.
I was also left with the following:
Be sure to consider “who’s suffering?” 80% of hospice patients have cancer so my experience with the demented is limited. That said, be sure to look inward when you’re dealing with a family member with dementia. Our minds can torment us more than the disease torments our loved ones.
My grandfather had advanced dementia and was fully capable of experiencing happiness and joy. He maintained his dignity, if not his memory, until the end of his life.
The death of an elder is an opportunity to make better decisions within the entire family. What did we get right? What would we change? What advance directives are needed for the next generation? for myself? Is my life structured appropriately if I start to experience symptoms of dementia?
Most personally, it strikes me that if I decide to kill myself then I deny my community the opportunity to learn from the end of my life.
As a society, we can learn to live better by taking care of people on the way out. My grandmother was moderately demented at death. She faced death with courage and caring for her was a gift, not a burden.
Watching a loved one unwind from Alzheimer’s is extremely difficult and I hope to have the ability to avoid judging opinions different than my own.
Real people, tough decisions.