Colleen Kelleher: Letter to Editor

To the Editor:

As a working daughter and recent former caregiver to a parent with vascular dementia, I can attest to the immense impact Alzheimer’s disease and related dementias have on patients, caregivers, and their families. In the spirit of March, which is Women’s History Month, this letter recognizes the hardship on family caregivers, especially women who make up more than two thirds of them.

I consider myself lucky that I had a great partner in a geriatrician who cared for my father before vascular dementia and aphasia, who subsequently diagnosed my father’s condition after a stroke. Neither my father nor I, had any idea what the journey ahead would be like. I can say firsthand that the dementia journey is heart wrenching for caregivers. I watched someone I loved, a Veteran (US Army Captain), who did everything for his family, had a successful professional life, and was a committed community leader, slip away day-by-day due to this cruel and unrelenting disease. It was unimaginable.

The Alzheimer’s statistics for New Jersey are sobering from the increasing numbers of people living with Alzheimer’s, the demands for geriatricians and health and personal care aides, and the startling numbers that capture the increasing strain on our already complex and understaffed healthcare system.

According to the recently released Alzheimer’s Association 2024 Facts & Figures report, there are 185,300 people aged 65 and older living with Alzheimer’s and 272,000 New Jersey family members and friends providing 494,000 of unpaid care valued at $10,882,000,000. The report also revealed that New Jersey dementia caregivers reported significant emotional, physical and health-related challenges as a result of caregiving, including:

● 62.3% of New Jersey dementia caregivers reported at least one chronic condition.

● 27.9% reported depression.

● 12.8% reported frequent poor health.

These statistics are personally devastating. Here I was doing the best I could do for my loved one yet I felt personal despair, isolation, and lack of caregiver support on so many fronts.

✓ I was among the 9% of caregivers who had to give up working. I had to step away from my independent consulting practice.

✓ I was also among the nearly one-quarter of caregivers in the “sandwich generation” caring for an aging parent and raising a child under 18 at the time.

✓ I am a daughter and my caregiving responsibilities greatly impacted time and responsibilities with my own family not to mention my own mental and physical health.

Where does this leave caregivers in New Jersey? This journey is a family journey. Caregivers need advocates. We need support in the workplace whether we are part of an organization or own a business.

I am hopeful about the progress we are making for caregivers and their families in New Jersey and am grateful I live in a state that recognizes the value of family caregivers. But New Jersey can do more. Help support family caregivers at the highest levels. Please go to https://p2a.co/Pn5srXT to call on your legislators to fund an Alzheimer's public awareness campaign that will put the foundation in place to educate key personnel so they may better respond to the needs of New Jerseyans living with dementia and the family members and friends serving as unpaid caregivers.

Colleen Kelleher, MBA, BCPA (Board Certified Patient Advocate) Pennington, NJ