One thing I’ve learned through writing about my family’s journey with dementia is that I’m not alone.
When my mother, who had vascular dementia, came to live with me in 2014, I became one of the thousands of family caregivers in Illinois. When my husband was diagnosed with early onset Alzheimer’s disease in 2015, I became even more aware of how dementia can affect a family.
I also came to appreciate the wealth of information provided by the Alzheimer’s Association (alz.org). Each year, the association comes out with its annual “Alzheimer’s Facts and Figures” report.
This year’s report provides some numbers to confirm my feeling that Tony and I aren’t unique. In fact, there were an estimated 312,000 dementia family caregivers across Illinois in 2022, providing 481 million hours of unpaid care valued at nearly $9.86 billion.
Across the nation, 6.7 million people 65 and older live with Alzheimer’s dementia, including 230,000 in Illinois.
Caregiving for someone with dementia can be a 24/7, year-round job, particularly if one’s person lives in the same household. That also means that it can be a source of stress. In our case, Tony can’t take care of himself and requires supervision for just about every task associated with daily living.
All of Tony’s household responsibilities now fall to me. Every decision regarding our family also now falls to me. That’s also a source of stress.
The Alzheimer’s Association found that dementia caregivers report higher rates of chronic conditions, including stroke, heart disease, diabetes and cancer compared with caregivers of people without dementia or non-caregivers. Here in Illinois, 64.2% of caregivers reported at least one chronic condition. In my case, I’m still being treated for breast cancer.
Not surprisingly, the report also found that the incidence of depression is higher among dementia caregivers when compared with caregivers for other conditions. In Illinois, 29% of caregivers reported depression.
The report also found that 74% of dementia caregivers report that they are “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. In Illinois, 14.3% report frequent poor physical health.
I can say that the COVID-19 pandemic was an eye-opener about the need to maintain my own health. It brought home how fragile our situation is. If I become sick, Tony can’t care for me, and I can’t care for him.
The report found that across the country, 59% of dementia caregivers experience high to very high emotional stress because of caregiving and 38% experience high to very high physical stress due to caregiving.
“This year’s ‘Facts and Figures’ report underscores the considerable physical and emotional toll Illinois caregivers experience when caring for someone living with Alzheimer’s,” Delia Jervier, executive director of the Illinois chapter of the Alzheimer’s Association, said in a news release. “It clearly underlines the need for caregiver support in Illinois.”
The good news is that caregivers like me do have resources to help with the journey. The Alzheimer’s Association and other local agencies offer support groups. The Alzheimer’s Association provides educational programming and a wonderful website. They even have a 24/7 helpline that can be a lifeline when problems arise.
Of course, we caregivers must be willing to reach out and get help. It’s easy to fall into the trap of thinking that we don’t have time, we don’t want to be a bother or we’ll get to it someday.
No, Tony and I are definitely not alone. The “Facts and Figures” report makes that abundantly clear.
Next week, I’ll share even more findings that highlight why we all need to do our part to address memory issues as soon as possible.
• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at firstname.lastname@example.org.