Susan McFadden - Dementia-Friendly Communities: Why We Need Them and How We Can Create Them

Dementia-Friendly

Communities

Why We Need Them and
How We Can Create Them

Susan H. McFadden, PhD

Many of us have heard the stereotypes associated with people living with Alzheimers disease or another dementia: that they are no longer themselves, that they are shells of their former selves. This common narrative focuses on degenerative processes in the brain coupled with the claim that dementia results not only in loss of selfhood but also in loss of humanity.

Of course, the suffering and losses experienced by persons living with dementia, by their families and friends, and by the people who interact with them in the wider community are very real. But I believe that there is another story to be told. This new narrative is about people working together in their communities to disrupt the assumptions about dementia that tell us that its symptoms are shameful and the condition hopeless.

I also believe that we need to disrupt the assumption that it is solely the responsibility of family members to offer care to people living with dementia. Today, most books about dementia focus on family care partners, although some use the more widely recognized word caregivers. This newer term, care partners, has gained wider use because it implies both that care requires a team (not a lone caregiver) and that the person living with dementia plays an active role in her own care. She not only participates in her care and decision-making as part of her care team, to the extent she is able, but also offers reciprocal care to those around her, which can be as simple as a smile or hug to show affection.

Such mutuality of caring can be expressed in many ways. For example, I once attended a community meeting called by several state legislators who were studying Wisconsins dementia support systems. A couple I knew from our local memory caf attended, and the wife, who cared for her husband with rather advanced dementia, signed in to speak to the legislators. I was sitting several rows back from the couple and observed that, when she was handed the microphone to speak from her seat, her husband reached over to rest his hand gently on her back. To me, that was an expression of a caring partnership.

Changes in family structuressuch as divorce and remarriage, fewer children, and everyones increased mobilitymean that care must be embedded in community programs and services acting in partnership with the care offered by family members and friends. That couple at the legislators meeting had relocated to our community when he was diagnosed with Alzheimers disease. They were some of the first people to attend our memory cafs. Even though they had an adult child living in our community, they reported that he was so busy with his work and family that they were not able to see him or his family as often as they had hoped. Quickly, however, through their participation in the memory caf, they developed a network of friends who shared aspects of their dementia journey. This is not what they had expected when they moved to our community. Their expectations had been disrupted.

Until the dawn of the twenty-first century, disruption usually had a negative meaning related to the ways in which human lives are disrupted by broken relationships, diseases, poverty, natural disasters, and wars. Recently, however, a different, more positive light has illuminated the idea of disruption. The shift in thinking about disruption arose in descriptions of new technologies and businesses disrupting everything from how we communicate to how we clean our homes. Those new technologies and businesses put telephones in our pockets that have more functions than we could have imagined when we got our first bulky desktop computers, and some people now have little robots that scoot all over their floors and eliminate the task of pushing heavy vacuum cleaners.

Reflecting this more positive view of disruption, some people have begun talking about disrupting dementia with a new vision that calls for partnering with people living with dementia in order to provide the kind of good life they want in their communities. These partnerships represent the foundation for dementia inclusiveness. This means that community programs and services for people living with dementia will be based on the expressed needs and desires of the people they are designed to serve.

The notion of disruption through technology and through changes in typical responses to dementia converged in 2016 at the enormous Consumer Electronics Show held annually in Las Vegas, Nevada. Technology entrepreneurs had the opportunity to attend sessions billed as presenting ways of disrupting dementia through technological innovations. A year later, Dr. Bill Thomas, founder of The Eden Alternative and The Green House Project (which intended to radically reform the culture of long-term care), created the Age of Disruption Tour, which includes a workshop called Disrupt Dementia. It features music and storytelling by people living with dementia.

The diagnosis of dementia, or even the suspicion of dementia, can dramatically disrupt peoples lives in a negative way.