What? That sounds like a pretty daring claim. Does this mean that caregivers actually have some degree of control over how fast their loved ones’ dementia progresses?
According to an impressive study at Utah State University, yes. But before you begin to either jump for joy or tremble with panic, let’s look at the study more closely.
I am actually familiar with this data given that I worked for the Alzheimer’s Association in Utah for several years. The Cache County Study on Memory, Health and Aging is well-known among those who study aging and has tracked over 5,000 older adults for more than a decade. One piece of this massive study is the Dementia Progression Study funded by the National Institute on Aging, which assessed 226 individuals who developed dementia and their caregivers.
The Dementia Progression Study asks the pivotal question, “What accounts for the variability in the rate of dementia progression?” In other words, why do some people with dementia decline quickly while others show a much slower progression over many years?
Of course, the type of dementia can markedly impact rate of decline, but the researchers adjusted for that. What they then found was that caregiver coping strategies significantly affected the rate of both cognitive and functional decline among those with dementia.
Is it that surprising that the caregiver wields a huge influence on the person with dementia? Not really. Better coping skills lead to better problem solving, which usually means that the needs of the person with dementia are more adequately met. Better coping can also prevent caregiver burnout, which as we know all too well is not good for the caregiver or the care recipient.
Another factor that comes to mind is the tendency for the person with dementia to mirror the emotional state of the caregiver. If a caregiver is coping well, the person with dementia picks up on that and feels better too.
Not that any of these things ever made me think that a caregiver’s coping skills could actually slow the progression of the disease, but hey – I’m all for empowering ideas.
And that’s just how I hope you see this too. I hope that this information empowers you instead of scares you. As caregivers, I know that you place a lot of responsibility on yourselves already. This kind of information has the potential to strike fear in your heart instead of encourage your soul. You may feel like you hold your family member’s fate in your hands now. You may feel like a rapid decline in your loved one must be your fault.
I am begging you not to do that. It might help to know that the researchers found that a person’s environment, overall health status, diet and nutrition, and demographic characteristics also impact the rate of decline. So instead of putting more pressure on yourself, I encourage you to use this information to bolster yourself as a courageous caregiver.
So here’s my recommendation: Work on your coping skills by learning more and sharing more with others who are providing care to loved ones. Approach caregiving challenges creatively, constructively and most of all, with confidence.
When things go well, celebrate. And when things go awry, do NOT blame yourself or become discouraged. As an alternative, keep learning and sharing, knowing that you are on the right track.
That’s all we can really do in life – and have faith in the larger lessons these experiences represent.
Leonard, W. (January 19, 2013). Utah researchers find caregivers' attitudes critical in Alzheimer's disease progression. Deseret News.