My Alzheimer's Journey
Part 21 - Importance of Friends and Family Support
According to the Alzheimer’s Association, over seven million Americans live with Alzheimer’s disease. That number is expected to be nearly thirteen million by 2050.
About 1 in 9 people age 65 and older has Alzheimer’s.
The lifetime risk for Alzheimer’s at age 45 is 1 in 5 for women and 1 in 10 for men.
Nearly 12 million Americans provide unpaid care for people with Alzheimer’s or other dementias.
Health and long-term care costs for people living with dementia are projected to reach nearly $1 trillion in 2050.
These are sobering numbers. The financial cost to care for someone living with Alzheimer’s is staggering. The physical and emotional toll on caregiver’s is overwhelming.
If current United States political trends continue, the burden of caring for someone living with Alzheimer’s is going to increase dramatically. This is due to the seemingly out of control rising healthcare and pharmaceutical costs, the slashing of government support programs like Medicaid and SNAP, and the unknown future of Social Security.
While researching this article, I looked at other countries Alzheimer’s care and support programs. The Netherlands, Japan, Australia, Canada, and Spain are some of the countries who have government funded healthcare and caregiver programs for their elderly citizens.
The reality in the United States is that most citizens must depend on family and friends for financial, emotional, and social support. Of course, the wealthy generally pay for the best healthcare and support systems.
Let’s focus on the average American for this discussion.
Studies consistently show that Alzheimer’s patients with strong family involvement experience better quality of life, slower disease progression, and fewer behavioral symptoms than those without such support. A 2022 study in Gerontologist found that dementia patients who received regular emotional validation from family members experienced 40% fewer episodes of distress compared to those who did not.
In an average American family, both parents likely work, they have busy lives caring for their children, and they are likely stretched financially. How do they handle the financial and emotional stress if a parent has Alzheimer’s disease? The specific answer is different in nearly every situation; but, in general, families struggle to maintain a healthy balance between their everyday lives and being a caregiver for elderly parents.
What about people with Alzheimer’s who are childless or are single? Linda and I do not have children (excluding our three felines), so, we certainly worry about my long-term care. As a breast cancer survivor, Linda is at a higher risk of developing cancer again. I can’t imagine what we would do if both of us needed long-term care.
Beyond the long-term needs, there are short-term, unexpected challenges that arise. These may be as simple as transportation to a doctor’s appointment, or buying groceries. For us, we had the unexpected relocation to be near Duke Health for my treatment.
Linda and I have first-hand experience with the challenges of long-term care for family members. We cared for my Dad during the last year or two of his life. Linda’s brother has multiple sclerosis leaving him bed bound at home. And, Linda’s Dad died In January 2024, leaving her elderly mother at home.
I think the support Linda’s family provides to each other is a nearly perfect situation. Linda’s nephew lives at the family home, and he is the primary caregiver for his dad (Linda’s brother) and his grandmother (Linda’s mother). Linda visits as often as possible (they live outside Washington DC). I am very close to the family, so I provide as much support as possible.
As soon as we told Linda’s family about my Alzheimer’s diagnosis, they stepped up in a huge way. Additionally, numerous friends, business associates, and neighbors provided support to help us with immediate needs. Without that support, we would not have been able to move to Chapel Hill.
Not every family is fortunate to have the support we do.
What do they do?
There are no perfect answers. There are community support groups, churches often provide support, and even living arrangements similar to the Golden Girls.
The reality is that many people wind up living alone in extreme poverty with worsening health. For Alzheimer patients, lack of quality care generally leads to a quick death.
In closing, I have four suggestions or steps that all of us should consider:
make long-term health care plans while you are young and healthy
become politically active (just voting makes a difference) to ensure there are government programs to support our aging citizens (if you paid taxes throughout your career or served in the military, I believe you deserve to be taken care of by the government)
build strong friendships and commit to supporting each other when the need arises
follow the example of Linda’s family - America was built on the concept that family members support each other no matter what