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The State of Alzheimer’s and Caregiving in the U.S.


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I recently had the opportunity to join more than 250 leaders and advocates at the UsAgainstAlzheimer’s National Alzheimer’s Summit in Washington DC. to learn more about the current state of Alzheimer’s and caregiving. At Home Instead, we care for thousands of people living with dementia and we’re passionate about truly understanding the disease to provide the best home care. And, for those we can’t serve as a client, we have a website full of helpful resources for families. Below are the highlights from leading physicians, researchers, pharmaceutical companies and advocates.

Alzheimer’s Drug to be Filed with the FDA
An announcement was recently made that a new Alzheimer’s drug will be filed with the Food and Drug Administration (FDA) in early 2020. This news brings hope as the drug trial was originally cancelled in March 2019 due to unreliable data. After new analysis, the data showed that after 18 months of taking the drug, aducanumab, participants in one of the studies showed anywhere from 15% to 27% less cognitive decline, compared to those receiving a placebo. The cognitive protection was most pronounced in those getting the highest dose of the drug. The volunteers who were taken off the drug in March due to the trial cancellation, will now be given the opportunity to receive the drug for at least two years. To learn more, read the Biogen press release and the recent article from Time Magazine.

 Lakelyn Hogan of Home Instead Senior Care and Meryl Comer, Founding Board Member of UsAgainstAlzheimers

Lakelyn Hogan and Meryl Comer, Founding Board Member of UsAgainstAlzheimer's, who works on the A-List, an initiative that gives people living with dementia and their caregivers the opportunity to contribute to research and provide input on what matters most to them.

Brain Health Across the Lifespan
A panel of experts highlighted that research points to the fact that Alzheimer’s disease begins to develop in the brain 20-30 years before symptoms become noticeable. Because of this, experts are pushing for a focus on brain health across the lifespan.

Experts suggest these simple things that can be done from an early age to help promote good brain health and reduce the risk of dementia.

  • Move more. Exercise is very important for good brain and heart health. A recent study showed that 8,900 steps daily can reduce the risk of cognitive decline. Other recommendations suggest exercising at least three times a week, doing a mix of aerobic and resistance or weight training.
  • Eat well. Several diets have been associated with brain health including the MIND diet or the Mediterranean diet. These diets include green leafy vegetables, nuts, berries, beans, whole grains, fish, poultry, olive oil and wine. Suggested food groups to avoid include red meats, saturated fats, sweets, and fried foods.
  • Get good sleep. It is important to practice good sleep hygiene, trying to get at least 7.5 hours a day. To help improve sleep quality, avoid caffeinated drinks after 1 p.m. and create a good routine of going to bed and waking up at the same time every day. It is also important to avoid electronics and screen time about 30-45 minutes before bed.
  • Manage chronic diseases. Chronic disease management is vital as 60% of the population with a dementia diagnosis has five or more other conditions. One chronic condition that could increase a person’s risk of dementia is diabetes. Heart disease has also been linked to poor brain health. Reducing the risk of chronic diseases can, in turn, reduce a person’s risk for Alzheimer’s.

The issue of brain health is a topic gaining momentum across all sectors. Even the Milken Institute, a nonprofit, nonpartisan think tank, recently released a new report with the main goal: “Promote strategies to maintain and improve brain health for all ages, genders, and across diverse populations.”

Lakelyn Hogan of Home Instead Senior Care and Sara Lock of AARP

Lakelyn Hogan and thought leader, Sarah Lock, Executive Director of the Global Council on Brain Health and the Senior Vice President for Policy in AARP’s Policy, Research and International Affairs.

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 $350 million increase.   

I encourage you to take action. Contact your legislators and tell them to support the CHANGE Act and funding increase. Here’s why is matters.

The Increasingly Important Role of Caregivers
There was an entire panel discussion about caregiving and the important role caregivers play. 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.

Megan Hix and Lakelyn Hogan of Home Instead Senior Care and C. Grace Whiting, the President and CEO at the National Alliance for 

Megan Hix, Director of Strategic Partnerships, and Lakelyn Hogan connected with C. Grace Whiting, President and CEO of the National Alliance for Caregiving.

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. Hear more about healthy habits for family caregivers from WomenAgainstAlzheimer’s in this live chat.

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% 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.

To get involved in the fight, click here. 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. If you need a community of online supporters to rally around you, begin following the Remember For Alzheimer’s Facebook page. Take support one step further and regularly receive an email from me with caregiving tips and hope to help you along the caregiving continuum.

Author: Lakelyn Hogan

Lakelyn Hogan is Gerontologist and Caregiver Advocate for Home Instead Senior Care. Lakelyn has been with Home Instead for five years, starting in the local franchise working one-on-one with seniors and caregivers. Now, her role at the Global Headquarters is to educate professionals, families and communities on Home Instead’s services and the issues older adults face. In partnership with the American Society on Aging, Lakelyn facilitates a monthly webinar series for professionals in the aging field. She also hosts monthly family caregiver live chats with Alzheimer’s and dementia experts from across the country.

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