Caring for a Loved One with Dementia
by Pam Leonard, LCSW
A common concern of caregivers of loved ones with dementia is that they are not doing enough to stimulate their loved ones to keep their minds and bodies active. In our CARES respite program we do spend most of our time engaged in social, physical and cognitive activities, but the reality is that this level of stimulation is very hard to maintain when you are also taking care of household and financial matters in addition to providing daily care for a loved one living with dementia. I have been reminded in my training, and I often stress with caregivers, that anything you do with your loved one is an activity, whether that is setting the table together, including them in a talk about what groceries to buy or singing together to music while riding in a car.
At CARES we have three "best practices" that I think translate well to caring for someone at home who has been diagnosed with dementia. The first is to remember that no matter what our age, cognitive ability or ability to communicate, we all have the need to be connected to others. Simple things like sitting across the table from each other during a meal can create this kind of connection. It can be listening to a story that has been told over and over again, affirming that the story matters, regardless of the speaker's inability to remember the details or the ending. It can be going through old photos, not to play the "remember this" game but to talk about the clothes, to imagine what that family must be doing in the picture, to let a loved one share what he or she observes. If there is a glimmer of memory, they will share that with you, and if not, you have spent time being connected in a way that might also feed you in remembering all the fun times you have shared together.
The next best practice I would like to share is using the strength of your loved ones. One of the things that dementia can still leave intact is the desire for someone to be a helper. At our CARES program, when we meet resistance from a participant, we may ask that person to help us with a task. If you have someone who can’t stay put during meal preparation and clean up, and who is demanding of your time, find a way to let them help. Jumble up the silverware and ask them to help you sort it. Or engage them with an adult coloring book, or "find the difference" puzzle. The man who has always tinkered with tools may enjoy organizing a makeshift toolbox. Take what they have always enjoyed and use it to occupy time that may be spent wandering, or to help with the anxiety that can come from being unsure of what to do with their nervous energy. I would make sure that these activities are something that they find enjoyable and not frustrating. Also, the activity should require little supervision so that you can focus on the things that you need to do.
The last best practice we always try to keep in the forefront of our mind at CARES is remembering what dignity and respect look like. It is my experience that we may lose many things to this disease, but we do not lose the ability to recognize when someone is treating us as "less than,"or not capable, or as if our opinions do not matter. No one is perfect, but remaining authentic, and being mindful of our tone, and involving our loved ones based on the progression of their disease in making decisions that are non-confrontational will reassure them that they still have a voice.
If you have a friend or loved one that is suffering with dementia, please contact Robin McMilin, 205.879,3438, to learn how CJFS can help.