What Might It Be Like To Live With Dementia?


I often hear people say that if they develop Alzheimer's disease they would consider suicide. When asked why, people usually respond that “not knowing what is going on is the most demeaning experience I can think of.”

Having cared for many people with dementia over a long career, I know that some individuals are very distressed by the disease, while many others seem genuinely happy. How can that be?

Part of the explanation, I believe, lies in the types of Alzheimer's impairments. Memory impairment, specifically an inability to learn new information, is almost universal in Alzheimer disease. This means being unable to recall information previously learned or experienced, such as what you ate for breakfast, or who you had dinner with last weekend, or the fact that your daughter is getting married this coming weekend.

This type of memory impairment also means not knowing what the future holds. Our knowledge of what is coming in the future depends on our remembering information learned previously. I know that I will be going on a trip next week, because I made the plans yesterday. If I do not recall the fact that I made travel arrangements yesterday, I do not know what is upcoming. This means that many people with moderate or severe memory impairment are living in the moment. What they can perceive and experience is in real time and lacks the background music that you and I experience in everyday living. If they are immersed in positive experiences, the person’s mood is more likely to be positive.

Another symptomatic impairment is difficulty talking and understanding what is being said. The inability to do every day, previously learned activities such as dressing and bathing, and a loss of the ability to recognize familiar places and people are other common sources of distress and frustration.

How then do we explain the fact that so many people with these illnesses are not depressed, demoralized, or constantly anxious?

Living in the moment means that people with dementia, like all of us, benefit by being engaged in conversation, activity, and human interaction. When engaged in a conversation with someone I know and like, the outside often ‘falls away.’ That interaction becomes the focus of my attention and the pleasure I derive from it is an important part of my life.

This ‘being in the moment’ is the goal of some forms of mindfulness and yoga—two approaches to mental wellbeing that currently receive a lot of attention.

This is one reason why a stimulating and supportive environment is so crucial to the care of people with dementia. By helping them be engaged, we can maximize the pleasures that come from activity and human contact. In those moments, their impairments fall from consciousness and their quality of life is fully shaped by their present.

Environment is important to all of us and is a major shaper of our wellbeing. This is as true for people with dementia as it is for others. Keeping this in mind should help us design and support environments that bring pleasure to people with dementia and help us escape the horror that many cognitively intact people consider inevitable in the face of dementia.

Dr. Rabins is the former Richman Family Professor of Alzheimer’s and Related Diseases in the Department of Psychiatry and Behavioral Sciences at John Hopkins University, and is currently Professor at the Erickson School, University of Maryland, Baltimore County. He is the co-author of ‘The 36-Hour Day’, a book about caring for patients with dementia, which is in its fifth printing. This article was adapted from Welltower’s blog Aging Insights and originally appeared here.
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