Joy for All of Us, Everywhere

In this season of heightened awareness of goodwill and helping each other, I thought I’d talk about something close to my heart. I sit on the board of I’m Still Here (ISH), a nonprofit organization that helps people living with dementia to flourish through engagement in life, family, and community. ISH works to improve knowledge around the subject of dementia and advocates for non-pharmacological approaches to the care and treatment of memory loss and dementia. I am asking that you join me in supporting the work ISH does to invite conversation and offer hope in this area of healthcare.

Why the Interest in Dementia?  

While I have seen little in my immediate family, live long enough and you will start to see it all around you in varying degrees. I first was confronted by the cruelty of the disease when a dear friend, Barbara Smith, was diagnosed with early-onset Alzheimer’s disease when we were only in our 50s. She and her husband, Dan Gatsby, worked hard to change the stigma around the disease, but Dan poignantly framed the pain it brings to families in a recent article. “Alzheimer’s is a form of terrorism. You can’t negotiate with it. It’s unrelenting. It’s evil. It has no soul,” he laments. “You lose the person before they die.”

Facts and Figures

Of the many types of dementia that exist, Alzheimer’s is the most common form, and can begin more than 20 years before memory loss and other symptoms appear. According to the Alzheimer’s Association and the World Health Organization, Alzheimer’s accounts for some 60 to 80 percent of all cases of dementia. Globally, dementia currently is the seventh leading cause of death, and one of the major causes of disability and dependency among older adults. In the United States alone, the National Institutes of Health estimate that 6.5 million Americans are living with Alzheimer’s dementia.

In 2019 alone, dementia care cost $1.3 trillion globally. Approximately 50 percent of these costs can be attributed to care provided by informal caregivers — e.g., family members and close friends — who provide about five hours of care and supervision each day.

Not surprisingly, women are disproportionately affected by dementia — directly and indirectly. Not only do they experience a higher proportion of dementia themselves, but they also provide some 70 percent of the care hours for people living with dementia.

I’m Still Here

While pharmacology still can be an important treatment option, modern studies have shown the benefits of other methods of treatment, including activities that cause a shift to a present-oriented focus. Dr. John Ziesel, an internationally known expert on dementia care and treatment innovations, founded I’m Still Here in 1996 to increase awareness of methods of treatment that involve a core set of principles.  His book, I’m Still Here: A New Philosophy of Alzheimer’s Care, his teaching, and his continued research all speak to approaches that champion concepts of dignity, engagement, community, and education.

I’m Still Here funds grants to individuals and organizations that follow ISH principles to improve and support the lives of people living with dementia — often modest, simple ideas that demonstrate what can be done to realize more from the present.

The I’m Still Here Principles

  1. STILL HERE: Engage the full person — their attention, enjoyment, and creativity – not just a part; they are still here.
  2. AUTHENTIC ENGAGEMENT: Offer present moment activities that authentically engage immediate attention with no need for recall or planning.
  3. PURPOSEFUL: Generate opportunities for purpose and meaning through activities that each person cares about, including inviting them to help and support others.
  4. SELF EXPRESSION: Use all the senses in creative arts to enable persons living with dementia to learn to express themselves.
  5. COMPETENCE: Encourage each individual to use their own knowledge and abilities, as well as to master new skills.
  6. CHOICE: Respect each person’s choices; involve them in decisions that affect them.
  7. SHARING ENGAGEMENT: Integrate care partners into activities so as to support care partners and reinforce existing relationships.
  8. COMMUNITY: Access and use venues and resources in the community when possible, so as to embed engagement programs in the community.
  9. REACH OUT: Engage persons with dementia living at home as well as in other settings.
  10. SPREAD THE WORD: Keep family and community partners informed about innovative programs that authentically engage persons living with dementia.

How You Can Make a Difference:

ISH fosters the use of visual arts and cultural events in local communities and in in-care facilities to help persons living with dementia remain engaged and fulfilled, and to help caregivers maintain meaningful relationships. Some of its main programs include:

  • ARTZ (Arts for Alzheimer’s), in which amateur and professional artists volunteer to perform or work with people in dementia care facilities or day settings in the community.
  • Meet Me at the Movies, where short clips from classic films and TV shows are shown, followed by audience discussion.
  • Meet Me at the Museum, where participants view and then talk about what they see and the feelings that art works evoke.  
  • It Takes a Village, which includes taking people to activities in local venues for musical events or visits to book shops, parks and cultural sites.

Steal the ideas! Spread the word!  Be the change! 

Third Chapter Living celebrates, challenges, informs and promotes conversations about housing issues affecting the Baby Boomer Generation. Check out our website to learn more about our work on aging-in-place options. The author, Reese Fayde, is a dedicated problem solver and skills development coach. She’s passionate about working with change-makers — individuals committed to transforming the status quo, whether it’s in their industry, community, or organization.

3 Comments

  1. John Zeisel on December 20, 2023 at 2:16 pm

    Reese. That’s some blog for today. John

  2. Sara Jean Lindholm on December 20, 2023 at 7:16 pm

    Reese, this is RIGHT IB! Thank you!!!!!!

  3. Michael S. Bernard on December 20, 2023 at 7:34 pm

    Thank you for sharing this information!

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