The following essay will appear in the forthcoming book by Marie Marley, PhD, and Daniel C. Potts, MD, FAAN, titled “Finding Joy in Alzheimer’s: New Hope for Caregivers.”
Among the general public, Alzheimer’s is typically considered a cruel and devastating disease that destroys its ‘victims.’ One that robs them of their very humanity. Caregivers may fall into a period of deep depression and despondence when the diagnosis is made. Grief is another feeling that can develop. The caregiver can also become angry at the situation, angry at God for letting the person develop this disease in the first place and sometimes even angry at the loved one who has the illness.
Yes, it seems that Alzheimer’s is a devastating illness and the person with Alzheimer’s can never more enjoy life. When I interviewed several experts on the disease, however, a somewhat different picture emerged. They unanimously agreed that although Alzheimer’s is a terrible disorder, people who have it can and do still have the capacity to enjoy life, even though for those in the later stages of the disease it may be only for relatively short periods at a time.
According to Virginia Bell and David Troxel, writing in The Best Friends Approach to Alzheimer’s Care, “Too much attention has been paid to the ‘tragic side’ of Alzheimer’s disease. This is a terrible disease. Yet, by dwelling on the negative it is too easy to victimize people with the illness and settle for lower standards of care.”
I interviewed Teepa Snow, a nationally renowned expert on Alzheimer’s caregiving. When I asked Teepa if she thinks people with Alzheimer’s can still enjoy life, she answered, “Yes. Almost all people with dementia, even those in the later stages of the disease, can enjoy life if they have the right support and environment.”
The entire book, Creating Moments of Joy: A Journal for Caregivers, by Jolene Brackey, is dedicated to this issue. She states, “I have a vision. A vision that we will soon look beyond the challenges of Alzheimer’s disease and focus more of our energy on creating moments of joy.” She adds, “We are not able to create a perfectly wonderful day [for people who have Alzheimer’s], but it is absolutely attainable to create perfectly wonderful moments – moments that put smiles on their faces, a twinkle in their eyes or trigger [pleasant] memories.”
Carole Larkin, owner of Third Age Services in the Dallas/Ft. Worth area, is a geriatric care manager who specializes in helping families with dementia issues. When I asked her the same question, she answered, “Absolutely. They can and do enjoy life. That enjoyment, when it happens, is moment by moment – pretty much the same way we enjoy life.”
Tom and Karen Brenner, a husband and wife team of Alzheimer’s caregiving experts, train family members, professional caregivers and medical staff in the use of cutting edge interventions for persons who have dementia. Tom answered my question by saying, “Yes. And their enjoyment in life is based, in part, on our enjoyment of them. It’s like a swinging door – it goes both ways.”
Karen added, “We believe we can reach all people with Alzheimer’s, including those others consider unable to communicate in any way. It’s almost always possible to communicate – even with people who have lost their verbal skills.”
People in the Early Stage of Alzheimer’s
In the early stages of the disorder you can often share in whatever fun activities the person enjoyed before developing Alzheimer’s. Some activities may need to be adjusted, however, to accommodate your loved one’s diminishing mental capacity. For example, you may need to play a simple card game instead of bridge; checkers instead of chess. Another example would be to provide jigsaw puzzles with fewer and larger pieces. (Such puzzles are available from puzzlestoremember.org.)
People with Mid-Stage Alzheimer’s
In the middle stages, people with Alzheimer’s may have more or less the mental and social skills of a young child. While it’s fine to do the old standbys – things like looking at old pictures or watching movies together, those are somewhat passive. With a little thought you can find more active ways to spend time together, such as giving the person ‘props’ the two of you play with together. The key words here are ‘play’ and ‘together.’
People in the Latest Stages of the Disease
Ms. Snow, in partnership with Senior Helpers, an in-home care company, developed ’Senior Gems’, a system that classifies dementia patients into 6 categories, each named after a gem. The ’Gems’ table shows the basic characteristics of people at each level and provides tips for interacting with them. Pearls are at the latest stage of the disease.
According to the Gems table, Pearls: “like pleasant sounds and familiar voices. They also like to feel warm and comfortable. For people in this category it’s beneficial to read or talk to them about good memories. They might not understand your words, but your voice will be soothing. You might also bring a new extra soft blanket or sweater for them to wrap up in or brush their hair and apply lotion to their skin.”
Yes, people with Alzheimer’s can, and indeed do, still have the capacity to enjoy life.
Take Maria Shriver’s Wipe Out Alzheimer’s Challenge here.