“I Thought I Would be the One Needing Care”
I’m seeing this more and more in the clinic: parents caring for adult children with dementia. The person with dementia is about 50 years of age. The diagnosis may be early-onset Alzheimer’s Disease or frontotemporal lobar degeneration (frontotemporal dementia or primary progressive aphasia). The person with dementia has no spouse, no siblings (or siblings unable or unwilling to step in), and no children. The caregiver is a parent who may be 75, 80, or 85 years old…and who may have significant health care issues of his or her own.
To be clear, there is such a thing as “childhood dementia” or Niemann-Pick Disease type C. I’m not writing about this topic. I am focusing on older adult parents caring for the middle-aged adult children. Not only am I seeing this scenario with greater frequency in the clinic, I’ve been receiving emails and blog comments and FB questions about resources for these caregivers. And what I am finding is…not much.
Hidden Caregivers
When one looks at family caregivers or care partners, the usual dyads that are described and discussed are adult child caring for parent(s) and spouses caring for spouses. There is more research emerging around younger children caring for their parents, a problem also encountered when people develop early-onset Alzheimer’s disease or frontotemporal dementia. Early-onset AD affects people younger than 60; FTD, the same–but with the greatest incidence occurring in people who are 45-55. When dementia hits at an earlier age, the caregiving costs tend to be higher. The person affected has to leave the workforce, often during his or her prime wage-earning years; and the caregiver may need to work in order to maintain critical healthcare benefits while practically paying his or her salary to an in-home caregiver. Or, if there are children, the children become default caregivers. I gave a talk to a group of social workers in 2017, where I talked about how dementia education should be provided to elementary, middle school, and high-school aged children. I also gave examples and talking points tailored to the various age levels.
Unique Issues and Problems Faced by Parental Caregivers
All caregivers need to have the necessary legal documents, such as powers of attorney, health care proxies, and advance directives. Getting these documents in order for your adult child, however, does feel weird and scary. The parental caregivers may also want to speak to an attorney about whether or not they need to have legal guardianship. In the case of FTD, where the primary behaviors may be poor impulse control around finances, guardianship is invaluable.
Financial Support and Health Insurance
When people develop dementia in mid-life, there will be a need to obtain disability and health insurance. I have an adult child with severe schizophrenia. It took 3 years to obtain disability, which then qualified her for Medicaid (in my state). Parental caregivers may wind up supporting their child with dementia until these benefits can be obtained. I would also recommend that parental caregivers seek additional legal/financial guidance and advice about accessing their child’s existing retirement funds (such as pensions and IRAs); many have hardship and terminal disease clauses for the early release of funds without penalties. Assuming that the child has these assets. I also highly recommend that parents consult legal entities such as Alabama Family Trust. Well-meaning parents may make financial decisions that could jeopardize their child’s eligibility for disability or Medicaid.
Contingency Care Plan
Every caregiver must have a contingency plan in the event that they die before their care recipients. However, if I am caring for my mom or dad with dementia, the likelihood is that they will go before I do. So I don’t feel the pressure that a parental caregiver may feel. There is also the issue of the parental caregiver requiring a hospitalization, or becoming incapacitated by a fracture or illness. While all caregivers and care partners have to think about and have a Plan B (or C, D, etc.), this issue is even more pressing for parental caregivers. Parental caregivers may also want to consider increasing their life insurance coverage and setting up clear arrangements for disbursements in their will.
Support Groups That Get It
Support groups can be a wonderful thing, but if you are the only parental caregiver, you may feel even more isolated. The parental caregivers feel lost in traditional support groups. Sure, you can pick up some hints about handling refusal behavior. But caregiving is more than figuring out how to handle difficult or bizarre behavior. It feels great when you know others are going through the same thing.
No Resources? Time to Develop Them
The dyads that are missing from all of the web sites and FaceBook pages and other support services are parental caregivers for adult children with dementia. I was unable to locate anything on the various associations’ web sites specific to parental caregivers.
Are you a parental caregiver for someone with dementia? Please contact me (dementiacentric@gmail.com). Do you know someone who is caring for an adult child with dementia? Share this blog. Let’s get a moderated FB group going, or ask me questions and I’ll look for answers (or discover them on my own). Share your successes so that you can lift other parental caregivers. We can truly make dementia our bitch as we fight for our kids.
Categories: Alzheimer's Disease Care Partners Caregiving FTD
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.
There is a woman in our support group that is caring for her adult son, who also has Down Syndrome. Would this be appropriate for her? If so, I will pass on the info. My understanding is that folks with Down are now living longer and the dementia is kicking in during their 40s.
Yes, it would be. Her son may already be collecting disability and be receiving Medicaid. However, you are correct about the dementia—which is difficult to diagnose in Downs because the screening tools are not appropriate for people with intellectual disabilities.
Dr. Jablonski, thank you for addressing the problems I am facing as a parental caregiver–55 yr. old daughter: BvFTd,:no spouse,siblings, children, father deceased. She was living with me until my husband with chronic arthritic pain could no longer tolerate her cd behavior. I have found a little house about 25 min drive from me in neighborhood in which she grew up. She still knows some of the people and they are aware of her condition. Dr. Powers feels she is able to live alone with some supervision. I have stocked her freezer with ready to prepare food so cooking is as simple as possible. Eating is still a problem (apathy, I suppose) and she weighs only 100 pounds. I have started making “super food” muffins for breakfast and try to take some nutritious home cooking for other meals. I think, that under the circumstances, this is the best possible arrangement for the present, but her no longer living with me makes it more difficult for me. My husband is also very demanding of my time so I am his caregiver in essence.
I am concerned that when she needs in-home help it will be difficult to find someone who can deal with BvFTD. Also a care facility with experience with FTD is a concern when that time comes.
Again, I want to thank you for taking the time from your busy schedule to help those of us who are struggling with this problem I will be happy to help in any way I can.
Ellen Perryman