The Pink Elephant - Preparing for the Possibility of Dementia

Heart breaking stories about dementia are becoming frighteningly more frequent in the media, but the majority of people stalwartly persist in denial; “it will never happen to me”, “there will be a cure” or “I’m eating right and exercising my brain to prevent it”.  Unfortunately, the statistics are pretty damning.  In Canada alone, 1.12 million individuals are expected to be living with dementia by 2038.  In fact, one person is diagnosed with dementia every five minutes.  Those are intimidating numbers even for the strongest optimist.  Perhaps it is time to start talking about the pink elephant in the room, preparing for the possibility of developing dementia. 

Alanna Shaikh, a public health expert, has been doing just that.  Her father developed Alzheimer’s disease twelve years ago and after watching his progressive decline from a bilingual college professor whose hobbies included chess and writing op-eds, to someone who no longer knows where he is, she decided to make some changes to her life.  She changed her hobbies by beginning to knit, started exercises that build muscle strength and balance and has tried to become a better person, all in a pre-emptive effort to build a bomb shelter for herself should dementia strike.   

Dementia is a progressive disease.  The signs of unusual forgetfulness creep up slowly and by the time most people have come to terms with their condition, it’s too late to make any major changes to their lives.  But people with dementia can live up to twenty years or more with their condition and despite devastating losses, some with dementia still consider themselves to have a good quality of life.  Research has identified some essential factors that influence this: mood, engagement in pleasant activities, good health and being able to take care of some of your daily personal needs.   

Mood and meaningful activities are intrinsically tied.  Being able to still do the things people love feeds their self-esteem which improves their mood.  For most, these activities require strong cognitive abilities and include reading, writing and paying attention.  Sadly, these are the abilities that deteriorate first in dementia leading to frustration and confusion.  However, people with dementia are often still able to perform activities that their hands have been doing for years despite the loss of those cognitive abilities.  Shaikh, who loves to read and write about public health issues realized that if she developed dementia, there would be no meaningful activity her caregivers could give her to engage her.  So she started learning how to knit and took up painting again in the hopes that her hands will remember how to perform this work even when her brain “no longer runs the show”.

Similarly, Shaikh started learning yoga and Tai Chi, both exercises shown to be good for developing balance and muscle strength.  Frailty increases with age resulting in falls and fractures from which some elderly people never recover.  For people with dementia, routine and repetition are important tools to help maintain their abilities.  In addition to a serious injury, the lack of mobility from a fall prevents this repetition which contributes to a faster decline in the skills to meet personal care needs and the development of other conditions because of a slow recovery.

Preparing for dementia does not mean that research on prevention or a cure is not necessary, but a silver bullet for dementia may still be a couple of decades away.  Meanwhile, the aging baby boomer population is making its way closer to seniorhood and the possibility of living with dementia for a decade or more is becoming a sinking reality.  A slow tide of change that recognizes the need for better housing options, personalized and quality care for those with dementia and support for their caregivers has started.  This was reflected by a more equal distribution of successful grants in both the biomedical and quality of life streams in the recent Alzheimer’s Disease Society of Canada research program (though not an equal distribution of funds), without the heavy weighting for biomedical grants.

More can be done.  In the meanwhile, Shaikh is attempting to change one of the hardest things for herself.  Trying to become a better person.  It is not an easy prescription, but for Shaikh, it means becoming a person whom others will want to be around and take care of despite personality changes, because the essence of that person still exists.   As she puts it best “I need a heart so pure that if it’s stripped bare by dementia, it will survive”.