“It feels so isolating.” This is a common refrain I hear when talking to family care partners of persons living with dementia.
In surveys, support groups, and personal conversations, spouses, partners, and adult children caring for someone living with dementia express the need for a variety of services, especially for social and emotional supports.
Loneliness and isolation are especially concerning and prominent.
A study published in 2020 of loneliness in dementia care partners in Great Britain found that nearly two thirds of the surveyed caregivers reported loneliness and 18% reported severe loneliness. Spouses and partners can experience feeling like they have lost lifelong friends who no longer know how to interact with the friend with dementia. A family caregiver’s world can become smaller as more time is dedicated to caregiving.
Dementia carries tremendous stigma in our society so care partners might feel uncomfortable talking to friends about this experience. There is also a lack of knowledge and public awareness around what dementia really is or what the difference is between dementia and Alzheimer’s, which can lead to further isolation.
There is Good News however!
The experience of being a dementia care partner can be reimagined through the power of dementia friendly communities. Dementia friendly communities are villages, towns, and cities that are accessible and supportive to people living with memory loss and their care partners.
This is the vision (and in some place already a reality) of members in these communities that are knowledgeable of the needs, strengths, and gifts of persons living with dementia. Community members can communicate effectively with persons living with dementia and are committed to offering support in small and large ways.
Creating and promoting community life that welcomes and involves everyone
Services and amenities are designed with accessibility in mind. Faith communities are informed and welcoming to persons with dementia. Librarians, bus drivers, retail clerks, bank tellers, and law enforcement receive dementia trainings. Communities where there is a foundational understanding of dementia provide personal interactions as well as services and public spaces that feel welcoming to persons with dementia.
To have dementia friendly communities, we need ‘dementia friends’. “Dementia Friends USA is part of a global movement that is changing the way people think, act, and talk about dementia. Anyone can be a Dementia Friend – we all have a part to play in creating dementia friendly communities! A Dementia Friend is someone who, through viewing a series of online videos or attending a live interactive session, learns about what it’s like to live with dementia and then turns that understanding into action.”
This Dementia Friends movement is about increasing awareness and destigmatizing dementia. There are many misconceptions that surround dementia so cultivating understanding, growing knowledge, and fostering inclusion can help reduce stigma and isolation.
Dementia Friends offers information sessions that are 60-minute presentations, online or in person, offered by Dementia Champions in your community. This info session provides an overview of dementia, examples of early signs of dementia, communication tips, and an opportunity to put this learning into action.
At the end of every Dementia Friends session, participants commit to one dementia friendly action as freshly minted ‘Dementia Friend’. This could be calling a friend who is a dementia caregiver or practicing one of the tips for communicating with a person living with memory loss.
There are currently 2,097 Dementia Friends in Washington state, with Dementia Friends operating in 24 or 39 counties across the state.
As a Dementia Champion, I see firsthand the positive impact that Dementia Friends has in the community. I am a trained volunteer who helps spread the word about how others can make a positive difference to people living with dementia by giving a Dementia Friends presentation to groups of interested individuals in their community.
During one recent session a participant shared what it meant to her to see so many people from her faith community show up to the Dementia Friends session in support of her and her family.
In a 2023 study of the implementation and impact of the Washington State Dementia Friends pilot: “Quantitative analysis showed that Dementia Attitude scores improved after a Dementia Friends session; this improvement was maintained through the 1-month follow-up.” It works!
Want to learn more about Dementia Friends WA? Visit their website: www.dementiafriendswa.uw.edu
Feeling overwhelmed and isolated at a family care partner? You don’t have to do this alone. Click here to schedule a get-acquainted call with one of our Certified Care Managers.
