In other columns, I have addressed compassion fatigue, care partner burnout, and the tragedy that can arise from unattended exhaustion. We stress again that you should not, and probably cannot travel this journey of dementia care alone. You should seek help where you can find it, and never entertain the dangerous belief that there is weakness in seeking other people and tools to share your load.
Two resources that are of inestimable value on this journey are the memory café and respite/day care. Both are services provided usually by skilled volunteers, but they are different, with different purposes.
A memory café is designed for sociability, not respite. It is a day program of one to three hours where both the care partner and the individual with dementia participate. The concept was developed by Dr. Bere Missen in the Netherlands in the late-1990s, and is now popular worldwide. It is both a therapeutic and entertaining experience for the person with dementia, as well as a learning opportunity for the care partner who attend as a couple to participate in planned activities that usually include art, music, sharing, a snack, and dancing.
Through a well-executed memory café, the care partner learns about dementia, about how the abilities of their loved one have changed, and how to look at these changes as new or changed abilities, rather than disabilities. The best memory cafes are managed by trained dementia practitioners who can help care partners look at their loved ones differently to find new ways to communicate and cooperate.
In my experience, some care partners resist memory cafes because they consider them “childish.” For example, a care partner in one of my support groups disdained the idea because, as she said, “My husband was an engineer. He is not going to color with Crayons!” Turns out, she was quite wrong, and after a few sessions she learned new ways to communicate with her husband and share his joy of accomplishment in the company of others like himself. In this way, a memory café is a great deal more than just passing the time. It is a place where the care partner learns new ways to travel the path of dementia in the company of others who are in the same journey.
A dementia day care program differs from the memory café in that it is a respite program where the care partner leaves his(her) loved one in the hands of trusted and skilled dementia practitioners – many of whom are volunteers – for a few hours. Dementia day care includes exercises, supervised games, music and dancing, and refreshments.
I believe that every person with a loved one on the path of dementia should take advantage of one or both of these programs. Start with the memory café. As you learn and your ability to communicate with your loved one improves, you will soon gain the confidence to leave them at a respite program where you can walk away with confidence that they are in good hands while you recharge your own batteries for a few valuable hours each week.
These programs, plus a support group managed by a certified dementia practitioner, are some of your best tools to navigate the challenging path of dementia. If you have the opportunity, take advantage of all of them because both you and your loved one deserve the best. In fact, we all deserve the best.
Debbie Selsavage is a Certified Trainer and Consultant in the Positive Approach to Care®, and a Certified Dementia Practitioner. Her company, Coping with Dementia LLC, is dedicated to making life better for individuals living with dementia. Contact Debbie at deb@coping.today to learn about free support groups on line.
Until next time remember: “We all deserve the Best”
Send your comments and stories to deb@coping.today