So often, it seems, the focus on someone with dementia is on what they cannot do. Partly, of course, this is because they need help to make up for the deficits in their abilities– to wash, bathe, prepare food, even spend time alone. But the challenge is to remember to look for and pay attention to what she can do.This is the difference between quality of care and quality of life. This month Elder Voice focuses on ways to help illuminate potential as much as we do disability.
The following two scenarios demonstrate different aspects to finding the potential and abilities of the people in care. What we can see are clues to how improving quality of life.
Scenario 1: Dinner in the dementia care unit of the nursing home where Mrs. A. lives is served on plastic dishes and cups. When we asked the Administrator why the residents were given plastic instead of china which most of us would use in our homes, she told us “they” (the residents) would drop and break them which would be dangerous as some people their don’t keep their shoes on. So it is done for safety and due to the limitations of the residents. Yet when we walked into the dementia unit of the home a kilometer down the road during dinner time, the tables were crowded with glassware and china. Clearly, her beliefs made her unable to see potential and it affects the quality of life.
Scenario 2: 96 year old Mrs. B. lives on a noisy, crowded, heavy care floor of a nursing home, where most of the residents have dementia. A former well known portrait artist whose subjects included members of the royal family, she can no longer walk. Due to dementia, her short term memory is so poor she may not remember what she was told two minutes after being told. When you see her in her wheelchair alone and staring out a window, she looks like she is in another world. But the other day as we came to check up on her and her care, we told her about a trip we took into the jungle of Mexico, where the villagers still made their own chocolate and coffee from wild cacao and coffee beans. She replied, “Most of us don’t know where our food comes from anymore. We have lost so much.” Despite her dementia and appearance, her words showed remarkable awareness and insight.
In nursing homes, it is easy to see how short staffing can affect approaches to care, which can lead to the depersonalization of residents with dementia. They become seen by some staff as a homogenous group of “them.” As these caregivers rush to try to complete the personal care for several residents in a row, a home can become almost factory like–get the first one up and washed and ready for breakfast and then move to the second, and then to the third. If there is a behaviour problem, give them a pill. Staff stop paying attention to a person as an individual and don’t think about who she is, what she may be capable of, and more important, how to challenge her and make her life as meaningful as possible.
To combat this, we need to shift our attention when we think about someone with dementia– whether they are at home or in a facility, or whether we are paid or non paid caregivers–so that their dignity and self respect are maintained. Here are some of our thoughts and the key words we use to help us to remember what should be the basis of our relationship with the people we care for:
CAN When someone with dementia is treated as though they are able to do, enjoy, or benefit from something, we often find that they do so. We need to be ready to exam what we think of as truth and recognize whether this is just our assumption. So go ahead and make assumptions about what she can do. She can use nice china. She can have a meaningful conversation. She will enjoy dinner in a nice restaurant. She can help cook. She can make decisions.
WITH Think of yourself as caring with and doing with, not caring for him or doing for him. What can you do together? Go shopping with him, as opposed to for him. Cook with him, not for her. Go for a walk together, don’t take him. Choose clothes with him, help him to dress, don’t dress him.
RELATIONSHIP Always remember you are in a relationship be it your client, parent, or patient. You are part of the equation when you are together. Whenever you can, enjoy yourself as well. Do things that are fun for both of you of you. Something as simple as showing pictures of your grandchildren, trying out different perfumes or colognes, watching hockey, or talking about what you will do or have done lately. When you share yourself and your enjoyment he will feel that and will experience the pleasure with you.
LISTEN Understanding the needs of someone with dementia isn’t always easy, especially when a caregiver is tired, stressed or busy. To discover what she wants might take a while and you may have to interpret her words or behaviour. It takes both patience and skill. But if we are willing and ready to really listen, by taking the time to stop and focus and let go of our assumptions about what she is trying to tell us because we think she will not make sense, we will hear her.
CHOICE As we begin to listen, to do with and not for, and stop making assumptions about what someone can do, we find we are engaged with a person who has more ability to make decisions than we thought. He may not make decisions about everything, but he will have the opportunity to do what he can. And if it appears that he is not able, then before we take away the choice and opportunity, we need to know if there is a way to help him so that he can. In other words, is the difficulty with him in choosing, or with us and our lack of skill or willingness in helping him to choose?
We know that dementia is a progressive disease; this means by it’s nature that the ability of someone with dementia to make decisions, interact, perform self care and recognize people declines. As that happens the approaches of doing with, encouraging choices, and listening become more of a challenge. But before we conclude this approach is no longer effective, we need to remember to think about the fire that burns dimly for a long, long time before it finally goes out.
