On the Alzheimer’s road

You know how when you are dieting, it seems like every place you look, there’s news about diets? I wish I were dieting — because wherever I look, there’s news about Alzheimer’s. 

Along with my sisters and brothers, I’m shuttling back and forth to my parents’ home this week, making sure that my mom has someone with her as she copes with the increasing toll of my father’s Alzheimer’s disease, which will soon put him in a skilled nursing facility. I know we are one family among a multitude, but I also know that each family’s experience of the vicious progression of the disease is unique, and uniquely painful.

BBC reported December 4 that dementia cases, including Alzheimer’s, are set to triple worldwide by 2050, going from 44 million people today to 135 people living with the disease by 2050. As more people live longer, more will be living longer with Alzheimer’s and other dementia. Rather than being a disease of rich countries, it will be a disease of everyone, with more than 90 million in poor and middle-income countries that lack the capacity to offer assistance to patients and families.

The numbers come from the Alzheimer Disease International organization, which advocates for more money for research on prevention and treatment. Those are laudable goals, but the staggering cost of Alzheimer’s today is the cost of caregiving. That means families and in-home care and community-based services.

My mom’s care for my dad has gone on for years — according to the doctors, far past the point when most people have to seek assisted living facilities or nursing home care. As a spouse, she doesn’t get paid for caring for dad, but other people may be assisted by paid in-home caregivers.

Adult day centers are another great resource, providing some care and structured activity, and some respite time for family members who are otherwise on duty 24/7.  Until very recently, that’s been a big help for my parents.

According to a press release from The Arc Minnesota, a coalition of 103 disability and senior community organizations called today for a five percent increase in state support for community-based services.

“’Community-based services that provide support to older adults and Minnesotans with disabilities are a critical component to helping them maintain good health and independence, allowing them to remain in their homes and communities for as long as possible,’ said Steve Piekarski, co-chair of The 5% Campaign and associate vice president of older adult services at Lutheran Social Service of Minnesota. ‘A five percent increase for these Minnesotans and those who provide them with care should be a top budget priority next session.’

“The estimated $86 million would provide a rate increase for home and community-based services that support 93,700 older adults and people with disabilities, with the bulk of the money going to compensation increases for roughly 90,800 caregivers.”

While most people think of Alzheimer’s in terms of dementia, it also takes a physical toll, including difficulty in walking and swallowing, loss of muscle control and impaired reflexes.

In some ways, our family has been lucky. With support from family, community resources, and, most of all, the love and courage and unstinting work of my mother, my dad has been able to live at home for long years after the onset of the disease. Now that time is coming to a close. It’s no longer safe for him to stay at home.

As we walk along this road, the calls of the Alzheimer’s Association for increased research and of the 5% Campaign for better funding for community-based services both make a lot of sense to me.