With a growing recognition of the toll that dementia takes on individuals, families, and communities, there is a movement to prepare our society to better meet the needs of people living with dementia. This movement is referred to as becoming "dementia friendly," and it can reduce stigma, increase inclusiveness, and improve care.
A family example
Len recognized me (his granddaughter) as his niece, Dorothy. He told me stories of his sisters – long since passed away – and not knowing why he told me these stories, my 10-year old self encouraged him. We heard the phrase "senile dementia" but it did not mean much to me or my family. Over time, he and grandma took more drives but saw fewer people since he had trouble remembering names. We visited more frequently to help out and give grandma a break. He needed more reminders and help with daily activities.
In my most vivid memories he is picking raspberries in the garden with a bucket tied around his waist. Or he is caught cheating at solitaire (in retrospect, he may not have seen it as cheating) and humming or singing random songs. We did not realize it, but we were trying to be “dementia friendly” by supporting his independence and safety.
What does it mean to be dementia-friendly?
We provided a safe space where Len enjoyed his favorite activities and engaged in day-to-day experiences. Other individuals – even if they do not have a family member with dementia - can also help. And when individuals become dementia friendly, so do families, organizations, and communities. One pebble in a stream can have many ripples.
More than two-thirds of people with dementia live in the community [pdf] – outside of skilled nursing facilities – and have the opportunity to interact with many members of their community. Dementia-friendly initiatives aim to change the way that communities and society think about people living with dementia. These initiatives go beyond being friendly; they are about increasing awareness of:
- how dementia is experienced by people
- how to respect and support the remaining strengths of people who have dementia
Increased awareness contributes to less stigma, greater social inclusion, and better care and services
In Australia, a dementia-friendly community initiative included people with dementia and their care partners as co-designers and co-facilitators for education events. These events reached over 1,000 community members. As part of the education and awareness campaign in this initiative, people living with dementia and their care partners shared their experiences in the media and in panel discussions at education events. They also provided consultation to community organizations and businesses about their experiences and suggested methods for providing better services. Community surveys before and after the educational events revealed significant improvement in attitudes towards people living with dementia.
A recent review of dementia-friendly hospital care interventions analyzed 28 publications. Six intervention categories were identified: 1) understanding behavior as a communication mechanism; 2) experiential learning and creating empathy; 3) clinical experts who legitimize care priorities; 4) staff with confidence to adapt working practices and routines to individualize care; 5) staff with responsibility to focus on psychosocial needs; and 6) building staff confidence to provide person-centered risk management. Results showed that the key to improving care and outcomes of hospitalized people with dementia was awareness training paired with the authority and opportunities to implement person-centered approaches. Some hospital systems are now regularly training their staff in dementia-friendly care.
How can individuals, families, organizations, and communities become dementia-friendly?
As a starting point, people can learn more about initiatives in the US and across the globe that aim to engage every part of a community. These initiatives offer training and technical assistance to general community members, businesses, law enforcement and first responders, health care and social care providers, faith-based groups, and even restaurants.
Dementia Friendly America (DFA) is a nationwide network supporting communities to best support people living with dementia. DFA provides many tools for leaders and community organizers. There are also Dementia Friendly Communities around the world that may inspire action in your own community.
Related to Dementia Friendly America is Dementia Friends USA. This program is part of a global movement (Dementia Friends – An Alzheimer’s Society Initiative) to change how people think, act, or talk about dementia. Through online or in-person training, one can become a Dementia Friend.
Most dementia-friendly initiatives are action-oriented. For example, participants identify actions they will take to be dementia friendly as a result of these initiatives. These actions may range from visiting with someone, being more patient, volunteering, or educating others.
One can take action on their own behalf or seek to enhance the dementia-friendly attributes of their workplace or community. Recognizing the supports needed by employees who are dementia family caregivers is one step. Another step can be to change home, business, or medical settings to make them more calming and less stressful (e.g., minimize noise).
Len died 30 years ago this month. Despite the three decades that have passed, the experience of supporting him stays alive in me. It is also alive in my work with Alzheimer’s disease program grantee communities that aim to be dementia friendly. Even with decades of experience, I ask myself and I ask you: what dementia-friendly action can we take today?This piece was originally published on The Medical Care Blog.