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Alzheimer's Caring Costs

We need to begin a national conversation about how we can provide financial assistance for Alzheimer's caregivers. The daily emotional stress of caring is great enough. We must find ways to reduce the additional stress on caregivers caused by the high cost of providing this care.
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Brain disease with memory loss due to Dementia and Alzheimer's illness with the medical icon of an autumn season color tree in the shape of a human head and brain losing leaves as a concept of intelligence decline.
Brain disease with memory loss due to Dementia and Alzheimer's illness with the medical icon of an autumn season color tree in the shape of a human head and brain losing leaves as a concept of intelligence decline.

It costs a lot of money to provide care for a person with Alzheimer's disease. Unless one is wealthy enough to self-pay, poor enough to qualify for Medicaid, or has an excellent long term health care policy, costs for Alzheimer's care can quickly drain retirement savings from people with Alzheimer's and their caregivers. For many caregivers, this is a great source of stress in an already too stressful life. How will they have enough money to continue their current life style if their savings are used up to pay for the care of their loved one?

Alzheimer's caregivers in desperate need of respite time will often first seek out social day care programs for their loved ones. According to the "Gentworth 2015 Cost of Care Survey,"the median yearly cost for adult day care programs in the U.S. is just under $18,000. If more assistance is necessary, or if day care programs are unavailable or unsuitable, Alzheimer's caregivers will often hire home health aides. According to that same Gentworth Survey, the median yearly cost for home health aides is just under $46,000. The same survey lists placements in assisted living residential facilities at a median yearly cost of over $43,000, but assisted living with separate facilities for Alzheimer's residents will often cost at least 10-20% more. Median yearly costs for a nursing home placement, according to this same survey, will cost more than $90,000, but again those costs will be higher for Alzheimer's patients due to the extra care they will need.

These are median national costs, and actual costs may be significantly higher depending on where one lives. I live on Long Island, NY, where rates are significantly higher than the national median. According to Gentworth's state-specific data just for NY, the median rate for an assisted living facility on L.I. is $67,500 per year. The actual annual cost for my wife's assisted living facility placement ... Clare has Alzheimer's and is in a separate 32 bed dementia unit in her facility... far exceeds the state median. Total placement costs for Clare will be just under $80,000 next year. If I were to eventually need a nursing home placement for Clare, my costs will be nearly double what I am paying now because, according to that same Gentworth survey, median annual nursing home cost for a dementia patient on Long Island is $155,125.

Lacking long term heath care insurance that may pay some or all of the costs of caring, how can middle and even upper middle class families possibly afford the costs of caring for their loved ones with Alzheimer's? Caregivers need help. Maybe the answer lies in providing tax credits or direct reimbursements to caregivers. Maybe the answer lies in providing tax subsidies or credits to institutions and agencies providing care so they can lower their costs to individual residents and their caregivers. Maybe our country needs to consider new legislation to allow Medicaid and/or Medicare to pay some of the caregiving costs for middle class caregivers. Some way, somehow, there needs to be some type of long term care cost relief.

I am extremely lucky. I am one of those fortunate caregivers with an excellent long term health care (LTHC) insurance policy. When my wife and I retired, we both took out LTHC policies. We did that only because of an experience that happened 10 years earlier, one that I had never forgotten. It was the day after our son was married. While the rest of their wedding party was casually dressed and enjoying breakfast, our son and his new bride got dressed up again in their wedding clothing and went to visit his new wife's grandmother in a nursing home, where she had been for more than 12 years while dealing with Alzheimer's. My daughter-in-law wanted her grandmother to know that she had just been married, despite knowing that her grandmother would probably not even recognize them or understand why they were there. However, it was important to our new daughter-in-law to do this because of the very close relationship she once had with her grandmother. I had never forgotten this, both as a beautiful lesson in love and as a reality check of how long someone can be in a nursing home with a terminal disease such as Alzheimer's.

So, when Clare and I retired, even though there was no history of Alzheimer's on either side of our family, we took out LTHC policies to protect our assets "just in case." Had I not personally experienced my daughter-in-law's noble act with her grandmother the day after her wedding, I doubt that the thought of taking out LTHC insurance would have crossed my mind.

According to the Alzheimer's Association's "Latest Facts and Figures" report, more than 5 million people are already living with Alzheimer's in this country. Clare and I were born in the first year of the baby boomers, 1946. As millions of baby boomers continue to age, and with people now often living well into their 80s and 90s, unless some major medical breakthrough is found this report notes that by 2050 as many as 16 million Americans may have Alzheimer's.

We need to begin a national conversation about how we can provide financial assistance for Alzheimer's caregivers. The daily emotional stress of caring is great enough. We must find ways to reduce the additional stress on caregivers caused by the high cost of providing this care.

If you would like me to respond to questions or comments about this article, please email me directly at acvann@optonline.net. All of my columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann. You can learn more about my journey with Alzheimer's and read more than 40 of my previously published articles in caregiver magazines, medical journals, and in major newspapers at www.allansvann.blogspot.com.

My next blog post will be in 2 weeks. Tentative title ... "Transitions for Alzheimer's Caregivers"