Lesson Learned: We are Not Meeting the Needs of Younger Onset Alzheimer’s Patients
Although ElderCare at Home has provided Alzheimer’s home care services for over 16 years, there are still those times when a certain client or new situation can cause our entire team to pause and take stock. Those times when we take a good, hard look at the services we provide and try to see if there is anything we can do better.
This was recently the case when we began providing care to a person with younger onset Alzheimer’s. Younger onset Alzheimer’s disease, also known as early onset Alzheimer’s disease affects people who are under age 65. Many are diagnosed as early as their 40’s and 50’s; when they still have careers, families, and children living at home.
The Alzheimer’s Association calculates there are between 220,000 and 640,000 people with early onset Alzheimer’s or related dementia in the U.S. today. For those requiring long-term care services, they are faced with high out-of-pocket expenses that, depending upon their age and financial circumstances, may not be covered by Medicaid, or other programs. The same programs that often will pay for someone who is 65 or older and who also has dementia. It’s a huge problem affecting so many, and we learned first-hand how devastating it can be.
Lack of Services for Early Onset Alzheimer’s Patients
When we began to help our client, we first focused on gathering all the information we could about the assisted living facilities and adult day care centers for those still so young, and who are living with Alzheimer’s disease in our community.
Sadly, we learned that in our area, there are no assisted living facilities just for persons with younger onset Alzheimer’s. There are no adult day care centers specific to meeting the psycho-social needs of someone who is still only in their 40’s, 50’s or early 60’s; where they can go to spend the day with other people close to their own age. And there are few organizations working to address the needs of those living with early onset Alzheimer’s, and the needs of the families who try so hard to care for them.
We then focused on looking at our own registry of referred caregivers. How many of the CNA’s and home health aides we refer have cared for someone with early onset Alzheimer’s disease? Have they received any special training or education to learn how a younger onset patient’s needs might be different from a patient in their 70’s or 80’s? Do they know how to engage and interact with husbands, wives, or other family caregivers who might be just a few years older than themselves?
Suffice it to say that at the end of the day we learned that our team, our organization, can’t solve all of these problems. We can’t start building assisted living facilities that might better meet the needs of a 50 year old dementia patient; or open adult day care centers devoted strictly to younger people diagnosed with Alzheimer’s disease.
Best Practices for Providing Care to Early Onset Alzheimer’s Patients
But what we can do, what we will do, is to use the information and knowledge we have gained as an opportunity to strengthen our own foundation. To create a new set of best practices which will assure our company, ElderCare at Home, can successfully meet the needs of early onset Alzheimer’s patients, and their families, when they turn to us for care, comfort, service and support.
Hopefully more organizations, both in our community, and across this country, will do what we just did, and take what might be a painful look, at where they stand.
It’s up to all of us to find the holes, fill the gaps, create the companies, build the organizations, and raise the bar, so together we can better meet the needs, and provide the care and services, to those diagnosed and living with, early onset Alzheimer’s disease.
Elayne Forgie has spent the last 26 years working directly with patients and families living with Alzheimer’s disease or dementia. She has been recognized by Sharecare and Dr. Oz as the #3 Online Influencer for Alzheimer’s, and as one of Maria Shriver’s Alzheimer’s Advocates & Architects of Change. She is the founder of ElderCare at Home and the CEO of the Alzheimer’s Care Resource Center, a 501(c)(3) not-for-profit organization dedicated to helping caregivers cope with the changes and challenges that accompany caring for someone with Alzheimer’s disease.