The third step in helping our loved ones retain a sense of self despite dementia is to balance safety with their need for autonomy and dignity.

In his book Being Mortal, Dr. Atul Gawande points out that in this country we seem to confuse prolonging life with preserving quality of life when someone is experiencing an incurable condition. As caregivers, we need to be careful that we do not forget that retaining a sense of self and well-being is vitally important when our loved ones are experiencing dementia.

Become an accommodator.

The third way that we can preserve a sense of self for our loved ones and clients experiencing dementia is by being careful that we respect the things that are a part of their personalities and the earlier life experiences that have shaped their preferences.

Recognize elderhood. The people who develop dementia are adults and usually our elders. They have lived for decades with the freedoms and responsibilities that accompany adulthood. I cringe when I hear someone say that people with dementia are like children or speak to them in patronizing tones. Losing rational thought and memory does not make someone into a child. Dementia impacts the ability to communicate and retain information, not maturity. Our loved ones continue to be our peers and our elders and we should be careful to treat them as such.

Respect beliefs and cultural preferences. We each arrive at elderhood with a very personal array of preferences, beliefs, values and understandings. As caregivers of people who have dementia, it’s important that we learn about these things that shape who our loved one or client is. There will be some beliefs that we cannot agree with, but we need to be aware of them so we can avoid confrontations. There will be other things we can support, such as cultural and religious beliefs. Helping someone retain a sense of self includes helping them keep in contact with the activities, habits and preferences that have shaped their lives.

Support personality traits. When someone is a night owl, we cannot expect them to be ready for breakfast first thing in the morning, nor can we expect them to fall asleep in the early evening. Some people need silence while others need to have a television playing in the background before they can relax. One person needs to eat slowly in a peaceful setting while another does better standing in the kitchen with commotion all around. When we pay attention to these kinds of personality traits, and accommodate them, we increase quality of life for our loved ones and reduce our own stress.

 

Providing person-directed care means getting to know as much as we can about the person who is experiencing dementia. We should treat them respectfully, as adults and our elders, but also with admiration. It takes a lot of courage and tenacity to negotiate daily life without memory or rational thought.

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