Chocolate and Perfume

I’ve been reading a lot about long-term care facilities (or nursing homes, both terms used interchangeably in Canada) and quality of life lately. It is particularly poignant for people with dementia for whom housing options are currently pretty limited. There are really three main categories: home care, assisted living and long-term care. While there is a motley assortment of options in-between, these are generally not equipped for people with dementia and currently have limited capacity. In fact, for most, long-term care is often the only option by default if no caregiver is available for home care because one of the requirements of assisted living (in BC atleast) is that you be able to make decisions about your own care. The hope is that this landscape will change soon, but it is the current reality.



When faced with the devastation of a diagnosis of Alzheimer’s Disease, I can’t begin to imagine how incredibly difficult it would be to grapple with the prospect of not being able to make your own decisions or have them respected. In fact, that more than the possibility of not remembering your children’s name can be the most daunting aspect of the future and often incites the extraction of ‘the promise’. “Promise me you’ll never put us in a senior home. No matter what. I would rather be dead” has already been requested by my mother. She’s in her fifties and is often mistaken for being in her forties (she would also kill me if I published her age on the world-wide web). That fear has grasped many baby-boomers by the collective and figurative throat. After all, most of us started making our own decisions before we knew how to say our name. At a year old, we knew what we did not want to play with, what we wanted to eat and when we wanted a bath. Who would want to regress back? Hence, quality of life. There are as many definitions as there are people, but it is generally “the sum of a range of objectively measurable life conditions experienced by individuals...may include physical health, personal circumstances, social relationships” (Felce, 1999). Perhaps the more appropriate term though, and the current catch-phrase, is person-centered care. Person-centered care maintains focus on the type of care provided and recognizes the uniqueness of people and the care they want. So each person’s values, relationships and personalities need to be taken into account by staff providing care (Epp, 2003). This in turn translates into better quality of life indicators.

One of the articles I read described a long-term care facility in mid-western USA which has taken this term to heart. It’s a fascinating and eye-opening read. Residents of Beatitudes, a facility in Phoenix, who have dementia are given a relatively free hand when it comes to decisions regarding their needs. If they want a bath at 2am, they will get one, if they want a piece of chocolate, they will be obliged and if they want to sleep all afternoon, they can and a dab of their favourite perfume can be a part of daily grooming. This technique of focusing on what brings patients comfort has resulted in Beatitudes having one of the lowest use of anti-psychotics and virtually no behavioural outbursts from residents. It’s an impressive record when considering the current dangerous rates of anti-psychotic use and polypharmacy (the concurrent use of multiple prescriptions) for those with dementia, used to try and curb behavioural issues that are associated with the disease. Beatitudes is not without structure but it recognizes that patients with dementia are not children nor do they play the role of parent caregivers. This is after all the essence of person-centered care.  There are several other care facilities like this popping up around North America, but they are still woefully few.

What interests me is why this technique is not employed elsewhere.  What does the research have to say? Cost effectiveness and staff re-training are probably large drivers of the low implementation in other care facilities, but if the trade-off is quality of life, is it really the decision we want to make? And how much of a role does the pharmaceutical industry play in this? More on my next post!