January 20, 2021
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The increasingly important role of caregivers

By: Julie Ann Soukoulis
December 13, 2019

There was an entire panel discussion about caregiving and the important role caregivers play at theUsAgainstAlzheimer’s National Alzheimer’s Summit in Washington D.C., which Lakelyn Hogan attended as Home Instead Senior Care’s Gerontologist and Caregiver Advocate to learn more about the current state of Alzheimer’s and caregiving.  Here is more review from her visit:

While “caregiver” is a frequently used term, people don’t always self-identify as a caregiver. Whether the person sees themselves as a caregiver or not, the panel urged researchers and clinicians to recognize the value that a caregiver or care partner brings to the care plan for someone living with Alzheimer’s. Caregivers can offer up a wealth of information about diet, sleep, physical activity and cognitive function, but their well-being should be evaluated just as would the person they are caring for.

Alzheimer’s Policy

Two important pieces of policy are actively being discussed.

1. The CHANGE Act would direct the Centers for Medicare and Medicaid Services to identify a uniform, reliable cognitive impairment detection tool. This policy is important because doctors miss a dementia diagnosis about half of the time. Early detection allows for better access to care, support and resources.

2. Increase funding for Alzheimer’s research. The U.S. House of Representatives will soon be voting on funding levels for Alzheimer’s research at the National Institutes of Health. This year the request is a million increase.   

I encourage you to take action. Contact your legislators and tell them to support the CHANGE Act and funding increase.  To learn more google the CHANGE Act of 2019.

Women and communities of color are at higher risk of Alzheimer’s

Alzheimer’s disease does not discriminate; however, there are certain segments of the population that are at a higher risk of Alzheimer’s disease, one of which is women. Two-thirds of people living with dementia are women. Women are also more likely to take on the caregiving role for a person living with dementia. The WomenAgainstAlzheimer’s organization has created a Be Brain Powerful campaign to raise awareness of this issue amongst women and encourage them to take care of their brain health. 

Communities of color are also at a higher risk of dementia. African Americans are twice as likely to develop Alzheimer’s disease than Caucasians. Latinos are one and a half times as likely to develop Alzheimer’s disease than non-Latino whites. Soon, 40 percent of people living with dementia will be people of color. Two great organizations are helping raise awareness and support for those living with dementia in communities of color: AfricanAmericansAgainstAlzheimer’s and LatinosAgainstAlzheimer’s.

What to call dementia?

An interesting discussion took place around the words used to describe dementia. The panel leader Angela Taylor from the Lewy Body Dementia Association pointed out that the nomenclature around what to call dementia may differ amongst various stakeholders – healthcare, government and the public. Additionally, some cultures lack dementia education and awareness, which can lead to denial, shame and the use of undesirable terms like “demented” or “crazy” to describe people living with cognitive impairment.

 A dementia diagnosis does not automatically mean the brain has failed. The disease progresses over time and it is important to honor the person where they’re at in the progression. Maybe it’s time to think of dementia as a spectrum similar to the autism spectrum. The consensus: Regardless the stakeholder, it’s critical to use “person first” language because a person is still a person; dementia does not define who they are.

If you need support caring for someone living with this disease, please call the Alzheimer’s Association’s 24/7 helpline at 800-272-3900. Our local office in Santa Rosa can be reached at 707- 573-1210.   If you need a community of online supporters to rally around you, begin following the Remember For Alzheimer’s Facebook page. 


Julie Ann Soukoulis is the owner of Home Instead Senior care office in Rohnert Park, mother of two and passionate about healthy living at all ages. Having cared for her own two parents, she understands your struggles and aims, through her website, to educate and encourage seniors & caregivers. Have a caregiving or aging concern?  She’d love to hear from you at 586-1516 anytime.