Tell Congress to Support Alzheimer’s Caregivers

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month, and I want to take this opportunity to recognize and honor the 1.6 million family members and friends across California who are currently caring for a person living with Alzheimer’s or other dementia.

The last eight months of the COVID-19 pandemic have been particularly challenging for these caregivers. Many of them were feeling isolated or alone before the pandemic; now, many have lost or had to reduce outside care and support services like adult day services, home health care and support from family and friends due to social distancing protocols.

One of the reasons that dementia caregivers have such a hard time is that our healthcare system treats Alzheimer’s and dementia differently than other progressive, fatal diseases, frequently neglecting to diagnose, disclose or effectively manage Alzheimer’s and other non-reversible dementias. In doing so, it too often fails those living with dementia and their caregivers.

According to the Alzheimer’s Association, only about half of those living with Alzheimer’s disease have been diagnosed and, of those who have been diagnosed, less than half of them or their caregivers are aware of their diagnosis.

Studies show that one reason doctors don’t disclose an Alzheimer’s diagnosis to their patients is due to a lack of effective treatments. Too many physicians believe that, because they can’t offer an effective treatment, there’s nothing they can do to help a patient with Alzheimer’s or other progressive dementia.

But this isn’t true: there’s a lot that physicians can and should be doing to help patients after a diagnosis of Alzheimer’s. Medicare recognized this when it created a new Dementia Care Planning benefit in 2017, giving clinicians the time and resources to provide a comprehensive set of care planning services to people with cognitive impairment and their caregivers.

The new benefit reimburses clinicians for providing nine essential services, including:

• Identifying and assessing a primary caregiver
• Evaluating safety (including driving ability and fall risks)
• Screening for and managing psychiatric symptoms associated with dementia, including depression (which is very common)
• Helping develop advance care directives
• Referring caregivers to community resources like caregiver support groups, caregiver education, adult day care and in-home care.

All of these elements are used to develop a detailed care plan that is shared with both the person with the diagnosis and their caregiver, resulting in a higher quality of life for both.

Dementia care planning helps educate people with the disease and their caregivers about Alzheimer’s disease: its symptoms, its progression and the common challenges facing caregivers. The more caregivers know, the easier it is for them to find help and prepare for the journey ahead. Dementia care planning also allows diagnosed individuals and their caregivers to learn about medical and non-medical treatments and clinical trials that may provide benefit and a sense of purpose to the person with the disease. Plus, studies show that individuals receiving dementia-specific care planning have fewer hospitalizations, fewer emergency room visits, and better medication management.

So why isn’t dementia care planning standard practice? Because patients and medical providers are often not aware of this new benefit and how helpful it can be. In the first year the care planning reimbursement was available (2017), fewer than 1% of seniors living with Alzheimer’s received the care planning benefit.

Legislation now moving through Congress would help increase use of the dementia care planning benefit by educating clinicians about it. The bill has great momentum in both chambers — 48 members of the Senate and over HALF of the House of Representatives — 236 members, including our local representative Eric Swalwell — currently cosponsor the bill. It is time for Congress to take action on this widely-supported bipartisan bill before the 116th Congress ends.

Please join me in urging Representative Swalwell — to ask House leadership to consider this critical piece of bipartisan legislation on the floor! To take action or learn more, go to https://p2a.co/NZRDdYi

To learn more about Alzheimer’s disease and ways you can support families and people living with the disease, visit www.alz.org.