Alzheimer’s and Family Caregiving
This year, in 2020, a significant portion of the American baby boomer generation has reached the age of 65 or older, which increases their risk for Alzheimer’s and other forms of dementia diseases. By the year 2030, the 65 plus age segment of the population will increase substantially, accounting for over 20 percent of the American people. In the absence of a cure, the number of cases of Alzheimer’s disease will increase. Projections that these Americans will survive well into their eighties, nineties, and beyond will dramatically increase. These longer life expectancies are due to continuing medical advancements in conjunction with improved social and environmental conditions.
The Alzheimer’s Association 2020 report entitled Alzheimer’s Facts and Figures cites that 83 percent of daily help for older Americans comes from family members, friends, or other unpaid caregivers. Of that 83 percent providing help, 48 percent (more than 16 million) do so for someone with Alzheimer’s disease or different dementia types. Annually, the number of hours these unpaid caregivers provide for their loved ones is estimated to be a staggering 18.6 billion hours of non-compensated care. These hours have an intrinsic value of 244 billion dollars to this nation, not a difficult number to arrive at considering the lifetime care costs in 2019 for older Americans who have dementia was 357,297 dollars. Fully 70 percent of the total dementia cost of care is borne by a family member who provides unpaid caregiving and out of pocket expenses that range from prescription medications to food for the loved one who has dementia.
Even these staggering estimates for lifetime care costs are probably significantly underestimated. Expenses do not take into account the impact of dementia on a family caregiver’s health. Nor does it account for a decrease in workplace productivity and lost wages due to decreased hours on the job when caregiving deems it necessary to skip work. Why is it these caregivers are so willing to provide assistance and care to a person who has Alzheimer’s or another form of dementia disease? The Alzheimer’s Fact and Figures report cite three main reasons for this sort of selfless devotion to a loved one.
The first is that for 65 percent of them, the caregiver has a strong emotional desire to keep the family member at home with them. The second is that 48 percent prefer to maintain proximity and closeness to their family members, making oversight easier and safer. Finally, 38 percent of caregivers indicate an obligation they perceive to care for their loved one with dementia. Words like love, and a sense of duty, are often cited as motivating factors to assume the care responsibilities for a family member who has dementia. Only 8 percent of older adults with dementia do not receive help from a family member or other informal care provider.
Who are these caregivers primarily? About two-thirds of them are women, and 30 percent of them are age 65 and older. Sixty percent of caregivers are married, cohabitating, or in a long-term relationship, and more than half of them are assisting their parent or an in-law with dementia. Approximately one quarter are in the sandwich generation, meaning they simultaneously tend to their aging parents and raise younger children.
Due to disease progression, nearly all Alzheimer’s and dementia sufferers end up in full-time nursing facilities. Loved ones are experiencing loss of judgment, orientation, and practical communication skills in the mid to late stages of Alzheimer’s disease. Some may exhibit strong personality and behavioral changes and become aggressive or even violent. At this moment, the family caregiver must accept they are limited in their ability to continue to provide substantive care and transition to more of an emotional support role as well as advocate for their loved one, interacting with the facility and staff to assure appropriate care. This transition is a relief to many family caregivers who often experience feelings of intense burden, impaired mood, depression, and poor health while caring for their loved one with Alzheimer’s in the home.
Unpaid caregivers experience a wide array of challenges when caring for their loved ones with Alzheimer’s or other forms of dementia disease. Financial, physical, social, and emotional well-being are continually shifting and often not for the caregiver’s better. While it is very generous and selfless to choose to care for a loved one experiencing dementia, it is also depleting, and most often, the “reward” for the service is saying a final goodbye to someone you love who no longer recognizes you. Caregivers of all types need to set boundaries to reduce stress for their own needs and reach out to local groups or forums online to share in successes and frustrations. Tending to your personal needs as an unpaid caregiver is especially crucial when caring for a loved one with Alzheimer’s or other dementia diseases.
We help families who have loved ones with dementia make sure there is a solid legal plan in place to cover care, how to pay for it, and how to prevent losing everything to the high cost of long term care. If you’d like to discuss your particular situation, please don’t hesitate to reach out.