A new trial is being carried out in the New Year to look at the effects of dosages of B3 vitamin to people who have been newly diagnosed with Alzheimer’s and this is reported in the Guardian.
It worked on the mice so there is going to be an open trial on humans.
All well and good. Research is a good thing and anything that might help should not be scoffed at.
It brought to mind a conversation I had last week with the daughter of a woman who has Alzheimer’s that I work with. Her mother has been diagnosed for about 5 years and has been stable for about three years now. No improvement but no noticeable deterioration either.
Things are manageable at home. More or less. She has moved in with her daughter and her daughter’s family but all is quiet. There are occasional upsets, like when she opened the door for the toddler to wander out of, but these serve as warnings.
Her daughter asked me about trials for medications and news she had seen about ‘cures’ for Alzheimer’s.
I explained that trials were still at early stages and that although we should be happy about the possible cures and treatments that will be available in the future, it is not likely that any will be available for her mother.
She told me she would pay anything to join the trials. She said she would travel up to Scotland if necessary – stay every day, do absolutely anything she could to trial a drug that may help her mother.
I wish there was a drug. That comment is a bit expedient. Everyone wishes there was a drug to help.
We talked about trials for a while. And hope. And how thin the strings are on which the balloon of hope can tie itself to ideas before I snipped the strings to let it fly away into the ether.
Sometimes I feel that I do a lot of snipping at the strings of hope. My nature is something of a realist. I bumble around, chopping down those fanciful ideas that allow some people to cling on to the idea that things might get better.. someday.. and bring them tumbling back down to earth.
Hope has a role though, but it is better based on at least a semblence of reality and honesty.
Image by vic15 via Flickr
At least another article in the Times at the weekend relates further research from University College, London by Cornelius Katona, which indicates the importance of a full social life to people with dementia.
I found it to be an interesting piece of research, people with Alzheimer’s at different stages were asked various questions (in various forms) relating to how happy they were with their lives. They were then asked again 18 months later.
those with the highest sense of wellbeing were also those who scored highest on “social relationships” measures – how many people they regarded as close, how often they saw them, and what the relationships were like. People who had the best relationships were the most happy, and stayed happy longer. The results also showed that the happiest people were those who hadn’t any indication of mental health problems such as anxiety and depression at the onset of Alzheimer’s. This, says Katona, indicated that they were ageing “successfully” – despite their decline in cognitive function. It means we should be careful not to judge a decline by our own standards, rather than their own.
In some ways, it isn’t surprising. We are taught and there is something also instinctive about knowing that good social networks make for a better quality of life in all aspects and areas. Sometimes people think that once the memory goes, these interactions aren’t remembered. The words might not be but the quality of the interaction remains important nonetheless.
The study also notes that
When you compare how a carer rates the quality of life of someone with dementia with how the person with dementia themselves rates it, then you find the carer always rates it lower. This is all probably related to the carer’s own susceptibility to anxiety and depression, because their lives are so stressed.
I mention this as it rings very true to me. I spend a lot of time supporting spouses and children of people with dementia. Talking them through the possible progression and the various ideas and plans that can be made to improve quality of life for both the person with dementia and the family around them.
We often ‘put ourselves in their shoes’. Think how we would feel in those circumstances. It sometimes helps neither the carer nor the patient.
It’s good to see that there is hope though. Katona states that
If we’re going to prepare for an ageing population, with a higher proportion of people with dementia, we need to tackle anxiety and depression better whatever age it strikes. And we need to facilitate social networks in middle and late life, before people start becoming more dependent.
So who knows if the vitamins will help in the longer term. Or the wonder drugs? At least when I cut at those balloon strings of hope, there is something more concrete and more immediate that can be offered.
The hope doesn’t have to live in the cure, but in the living well. Or as best as possible.