Oliver: New federal GUIDE program aims to help those with dementia, caregivers

One frustration a lot of us caregivers experience is not knowing what kind of programs are available to help us with taking care of our loved ones. It’s not as if they hand out manuals for how to be a caregiver when you find yourself in that role.

A lot of what we learn is through trial and error. We figure it out as we go and hope that we do enough to keep our loved ones safe and relatively happy.

I remember how overwhelmed I felt when my husband, Tony, was diagnosed with early onset Alzheimer’s disease in 2015.

Since I had been caring for my mother, who had vascular dementia, I had some idea of how dementia worked. I had been fumbling along in figuring out how to care for her.

At the time Tony was diagnosed, the Alzheimer’s Association had a program where a local representative would meet with families to give them information about the disease and what to expect. A support group for people who had just been diagnosed also was available for Tony.

However, because Tony wasn’t a senior citizen, I felt that we weren’t eligible for a lot of the programming that was available for people with dementia. After all, not that many people are diagnosed with Alzheimer’s before they are eligible for retirement.

What would have been wonderful would have been to have something like I had when I was diagnosed with breast cancer. I had a team of people at my disposal and a care navigator to walk me through all the steps of my treatment.

Up until now, at least that I’m aware of, that hasn’t been the case for those who are dealing with dementia.

However, that’s about to change. A new Medicare dementia care model was announced on the federal level on July 31. The U.S. Department of Health and Human Services, through the Centers for Medicare & Medicaid Services, presented its Guiding an Improved Dementia Experience (GUIDE) Model.

The program aims to improve the quality of life for people living with dementia, reduce strain on unpaid caregivers and help people remain in their homes and communities. This is done through a package of care coordination and management, caregiver education and support, and respite services.

“While we have made tremendous progress in improving care for people with dementia through the National Plan to Address Alzheimer’s Disease, people living with dementia and their caregivers too often struggle to manage their health care and connect with key supports that can allow them to remain in their homes and communities,” CMS Administrator Chiquita Brooks-LaSure said in a news release. “Fragmented care contributes to the mental and physical health strain of caring for someone with dementia as well as the substantial financial burden.”

Under the model, people with dementia and their caregivers will have a care navigator who will help them access services and supports, including clinical services and nonclinical services such as meals and transportation through community-based organizations.

Other highlights include education and support, so caregivers can have training on best practices for caring for a loved one living with dementia. Respite services aim to help caregivers continue to keep their loved ones at home, preventing or delaying the need for facility care. Caregivers also will have 24/7 access to a support line and ongoing monitoring.

The model program also takes into consideration the even greater difficulties underserved communities have in accessing care for those with dementia. Special emphasis is planned to improve the health outcomes and caregiving experience of Black, Hispanic and Asian Americans, Native Hawaiian and Pacific Islander individuals and their families.

The Centers for Medicare & Medicaid Services are expected to release the application for the GUIDE voluntary, nationwide model this fall. The model will run for eight years beginning July 1, 2024.

So far, this looks like a promising program, at least from where I’m sitting. It hits on a lot of areas of my concerns, as well as aims to give caregivers a better chance of knowing what help is available.

Here’s hoping it can provide needed help for this growing segment of the population.

I’ll definitely be keeping an eye on it.

• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.