There is a Nigerian proverb “it takes a village”.
It is apparently a common thought and term in many African languages and it refers to the communal nature of raising a child in many African villages. I would like to borrow and broaden that term to say something like “it takes a village to raise a person.” My reason to reference that term is that it occurs to me that we need to be more conjoined and collective in our approach to a concern that affects every person I know. In our childhood and parenthood, we have many resources available to us to help us reach the goal of a healthy and happy adult. But those resources dissolve away when our loved adult strays from our perceived norm and is diagnosed with dementia. Similar to mental illness, it is a problem we tend to hide and avoid. Most newly diagnosed persons with dementia have been showing some signs for years before. It is the current “scourge” diagnosis. The reality is that it is the disease of our future. In the upcoming years more people will have this diagnosis than any contagious illness we have ever known. Everyone has a stake in this.
So, what needs to happen? Well, lots of things as with any disease we are trying to beat back. We need many more funds to go into the study and eradication of Alzheimer’s Disease. We could have a fundraising like the very successful ALS ice bucket challenge. That effectively raised a lot of funds for a disease most people have never heard of and will never know anyone with it. In comparison, I can name a dozen friends and acquaintances, a family member, countless former patients and a flock of neighbors with nearly incapacitating dementia.
The diagnosis of dementia is horrifying for the individual. I remember when my sister called me three years ago and said, “Pat, they think I have dementia.” The panic in her voice and the devastation were audible. Now three years later she needs considerable assistance and barely knows me. The diagnosis of dementia is an albatross around the neck of the whole family. It seems like a whittling away of one’s being with the losses and the inability to hold it at bay. There are no protections and there is no cure. Nothing slows it down and nothing alters its course. As Meryl Comer relates of her physician-husband, the “scaffolding of his identity – unraveled over several years.”
Rich, poor, educated, uneducated, White, Black, or Latino, we are all at risk. However, the diagnosis for the spouse, sibling, child or friend is also devastating. The task of caregiving for someone with dementia is a labor of love and an unbelievable burden. No two days are alike and no one can prepare you for the course. The burden is immense, challenging and sometimes very lengthy. Many caregivers suffer in their own health under the burden of care for another. That is why I believe “it takes a village to raise a person through this life.”
One small way that this burden can be lightened is for accessible and affordable intermittent relief or respite for the caregiver. Most living circumstances soon become unaffordable if the course of the dementia goes on for many years. One option in many communities is the availability of adult day care. Having a safe and comfortable option for the person with dementia and for the caregiver to have a break from the continual caring is one of the best utilizations of precious money.
Cache Valley once had an adult day center that was well used and well loved. The caregivers who could still go to work and keep their loved family member at home especially appreciated it. It was a wonderful service to our community. It is perhaps one of the very best uses of funds as it prevents institutionalization, which is extremely expensive and can eventually bankrupt a family. Families with persons with a dementia diagnosis are some of the most determined and strong people I know. But they have suffered through the loss of this service being available. It is money well spent on our “village” of people.