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Youth, Women and Dementia

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Kathy, granddaughter, and senior having ice creamBy Lakelyn Hogan

With one in 10 people over the age of 65 living with Alzheimer's (according to the Alzheimer's Association), and 16.1 million Americans providing unpaid care for someone with Alzheimer's, nearly everyone is touched by this disease.

Did you know every 65 seconds someone in America develops Alzheimer's, and every three seconds someone in the world develops the disease? Through understanding and education, we will be better prepared to care for our loved ones with Alzheimer's disease or another dementia disorder.

Every September, the Alzheimer's community dedicates itself to World Alzheimer's Month, a month focused on research, collaboration and hope. At Home Instead we see the daily impact Alzheimer's has on family caregivers, family members and those living with the disease. As an organization, we're passionately committed to fulfilling our mission: to enhance the lives of aging adults and their families and a big part of that is our commitment to raising awareness for Alzheimer's and other dementias. 

In the past few months, I had the privilege to attend a few conferences focused on the future of Alzheimer's. It was inspiring to see people all over the globe working to better the lives of people living with dementia, better help the people caring for those with dementia and Alzheimer's, and working hard to further research efforts for better treatments and a cure.

Below is what I found most interesting and impactful from these events. I encourage you to visit their websites to learn more about each event's objective.

Youth's involvement in dementia education and caregiving is changing globally.

There is an emphasis around the world to educate young people on dementia and Alzheimer's. Various countries are stepping up to begin education earlier and it's inspiring.

In Japan dementia education is integrated into school classrooms in fourth through seventh grades. These young grade school children are then educating their parents on the disease. This approach is taking intergenerational learning to a whole new level!

Dementia Australia has a program called "dementia in my family." This website has educational material and resources for youth of all ages. For preschool age children, there is an interactive book about how the brain changes. Teens can share their stories and learn from others. The education materials range from preschool age to16 and reach the youth right where they are, online. I'd encourage you to look at the program:

I had the pleasure of meeting a 5th grader named Hailey from the U.S. who started her own blog and support network for other young people: Kid Caregivers. Her blog has great tips for young caregivers. This video tells a bit more about her story.

There is a research gap for women with dementia.

Women are affected by Alzheimer's and dementia more than men. In fact, 70% of new Alzheimer's diagnoses will be given to women; however, research for the disease is focused on men. The male and female brains are different and these differences must be taken into consideration when scientifically researching dementia and when researching the effects of dementia on caregivers.

A NYU researcher, Mary S. Mittelman, DrPH, shared her results from studying male and female caregivers. She found that there are gender differences in caregiving, which means they may need to be supported differently. For example: men were more likely to place loved ones in care communities and women were more likely to care for loved ones at home. Men were also more likely to regularly attend support groups than women.

Women's Brain Health Initiative is an organization dedicated to helping women care for their brains to help prevent cognitive decline. It's recommended that women are proactive and start caring for their brain at a young age by eating healthy, exercising and reducing stress.

The long-reaching impact of dementia.

At the National Alzheimer's Summit, I learned about the latest in Alzheimer's research. There are roughly 100 Alzheimer's drugs in the drug "pipeline." This is a slight increase over the number of drugs in the pipeline in 2017. These drugs are also designed for a wider variety of "targets" than ever before. In other words, these drugs are combating Alzheimer's in different ways than they traditionally have. My biggest take away from the research conversation was that we can remain hopeful that some of these drugs will successfully make it through the trial phase and move to public use by the year 2025.

Among conference attendees were people living with dementia and their caregivers. Their resounding message was loud and clear: "We want to be included in the research and we want our voices heard." One way to be heard is through an online community called the A-List. The 6,000+ A-List members use their collective voice to overcome scientific skepticism around the value of the patient and caregiver engagement in research. You can join them today!

On the final day of the summit, participants had the opportunity to visit Capitol Hill to talk to lawmakers about the CHANGE Act of 2018. The CHANGE acronym stands for Concentrating on High-Value Alzheimer's Needs to Get to an End. The UsAgainstAlzhiemer's Activist Toolkit can provide more details on the CHANGE Act.

As long as Alzheimer's and dementia impact us, there is only knowledge to help shape the journey. Please bookmark and share these resources.

I hope this list of resources, organizations and support communities eases the Alzheimer's and dementia journey for those living with the disease and their caregivers. 

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.

Lakelyn is a doctoral student at the University of Nebraska – Omaha where she is studying Social Gerontology. She has a Master of Arts in Social Gerontology and a MBA from UNO. Lakelyn loves giving back to her community and is currently Vice President of the Board of Directors for the Dreamweaver Foundation. Dreamweaver grants lifelong wishes for terminally ill older adults. She is also active in the Alzheimer’s Association’s Walk to End Alzheimer’s. Lakelyn has a passion for helping others, especially aging adults and their families.


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