What is the goal of treating people with dementia? The FDA has understandably concluded that an effective treatment must show improvement in memory and other aspects of thinking. This makes sense to me. Some years ago, though, I concluded that non-curative therapies should do more.
The benefits of FDA-approved drugs for treating Alzheimer disease are minimally or modestly effective for improving memory and cognitive function. Since that is unfortunately the reality, I believe that improved quality of life should be a primary outcome of all therapies for dementia, whether psychosocial or medication.
A number of researchers and thinkers have been studying the general construct of ‘quality of life’ in healthy and sick people. These studies found that both subjective well-being and objective measures of function contribute to how people rate their quality of life.
In the 1990s, a number of researchers, including myself, developed scales to measure quality of life in people with dementia and used these to carry out an extensive body of research. While the scales differ, they demonstrated for people with dementia that quality of life can be accurately measured, that these measures tap into a valid and important aspect of their lives, and that many experience a positive quality of life even as the disease progresses.
Our research led to more questions—could a group of diseases that rob people of intellectual function and independence affect quality of life in ways that other diseases do not? And what aspects underlie quality of life in people with dementia? Working with Johns Hopkins colleagues, Betty Black, Judith Kasper, and Leah Kleinman, we found that quality of life in people with dementia rests on 5 relatively distinct domains:
- Social Interaction
- Awareness of Self
- Feelings and Mood
- Enjoyment of Activities
- Response to Surroundings
I think this finding is important because it suggests that the lives of people with dementia could be improved by environmentally and personally targeted interventions, and that this improvement could be measured. Further, the finding demonstrates scientifically something we had already come to know– the quality of how we care for people with dementia has a direct effect on how they experience life.
The identification of quality of life as a meaningful construct has led many researchers to ask whether specific interventions could be proven to improve the care of people with dementia. There is now an extensive body of research demonstrating that helping people keep active and busy, maintain social contact with others, interact with pets and music, talk about their lives and topics that are meaningful to them, and live in a caring, supportive environment benefits them.
While these results are intuitive, demonstrating them scientifically enables us to convince skeptics that good care benefits people with dementia. It also helps us establish standards to which all programs that care for people with Alzheimer disease should aspire.