Unless we balance our loved one’s need for autonomy and dignity with their need for safety, we cannot help them preserve a sense of self.
In his book Being Mortal, 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. We need to accommodate and respect our loved ones’ personalities, preferences, and their earlier life experiences.
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 devolve someone into childhood. 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 preferences, 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.