We are all living with dementia!Visions of dementia-friendly communities Susan H. McFadden, Ph. D John T. McFadden, M.Div.
Globally, people now age 60 can expect to live another 19 years (World Health Org.) By 2050, people age 60 and over will account for 22% of the world’s population (World Health Org.)
The most well-documented risk factor for Alzheimer’s and other dementias is AGE!
723,801 persons 65+ in MD in 2010 79,618 (11%) may have some form of dementia
Epidemic of dementia ApocalypticDemography Silver tsunami Bankrupting societies
Telling a new story about aging and dementia • The fear: Old age in an institution; losing one’s mind • The dream: Active aging “in place” (and compression of morbidity) • The nightmare: “Stuck in place,” confused, forgetful, and alone • The new story: Aging with joy and dignity in community, with dementia accepted as a disability
Dementia is a progressive impairment in memory, cognition and the ability to reason
Neurocognitive disorders (Minor and Major) NCD due to HIV infection Vascular NCD NCD due to Parkinson’s Disease NCD due to Prion Disease Fronto-temporal NCD NCD due to Alzheimer’s Disease NCD due to Huntington’s Disease NCD due to Lewy Body Disease Substance-induced NCD NCD due to traumatic brain injury
Where we Currently stand Growing number of people entering old age Longer life expectancy At age 65, one person in nine has AD (usually undiagnosed) By age 72, one person in three experiences cognitive decline At age 85, up to 40% of all persons will have some form of dementia Critical shortage of geriatricians and geriatric psychiatrists Few potentially effective medications on the near horizon
FEAR The course of dementia Changes in the Brain SymptomsD E DiagnosisA T ???????????????H
“devastating, deterioriating, debilitating, and heartbreaking” “it takes everything away from you” “the defining disease of the Baby Boom Generation” “Alzheimer’s robs people of all bodily functions and eventually their humanity” “It means the loss of anything and everything you have ever known.”
Who is affected by this fear? • Persons experiencing memory loss • Reluctance to obtain an early diagnosis • Withdrawal from social contacts • Family members and friends • Social isolation • Persons who work with those diagnosed with dementia • Status contamination • Social institutions, like faith communities
Why do we need a new story about dementia? • People fear dementia more that developing cancer, heart disease, diabetes, or stroke (MetLife Foundation, 2011) • Fear + lack of knowledge = STIGMA
Dementia: a “disease of exclusion”(Corner & Bond, 2004) • Jane said people don’t want to talk about her diagnosis but “They wouldn’t mind asking me about having the flu.” • Holly described how friends don’t come to visit her dad very much: “I’m sure there are people who want to help but they just don’t know how to approach it. People don’t call here much; they don’t stop in as often.” • Gloria, who cares for her husband, said, “Our friends have just kind of moved on from us. We’re not really chummy with our neighbors. I just don’t want to burden people with my troubles.”
But… there is hope in an educated community • A community that no longer fears or stigmatizes dementia • A community whose institutions (public commercial, social and spiritual) extend hospitality and inclusion to persons with dementia
What do we mean by “community”? • Civic life that extends social citizenship to people living with dementia • Faith communities • Web of family and friends • Neighborhoods • Clubs and affinity groups • “The third places” • Wherever we interact with others in ways that shape and form us through giving and receiving.
What would a community look like if it offered hospitality, inclusion, and support to persons with dementia and their care partners? Where can we find a community like this?
What is a memory café? • A memory café is an ‘open’ event that is free to attend and is designed for carers and the person with dementia to meet others in the same situation. • It is a relaxed and fun place to talk and share memories. • It promotes empowerment and unlocks potential. • Provides a safe environment to ask questions, gather information and express thoughts and feelings. • It is a community led initiative which promotes social interaction and combats isolation. (Jo Hague, Dementia Progamme Manager and Trainer, founder of the Lostwithiel Memory Café in Cornwall)
Singing for the Brain (England)Lyrics & Laughter (Valley VNA, Neenah, WI)
OUTINGS Dementia Adventure (Essex, UK)
We returned from England filled with energy and excitement and asked: Why are these programs, all of them inexpensive and easy to organize, not happening here?
Components of the Fox Valley Memory Project • Two initial memory cafés (with three additional ones planned) • Research & Development • Care Partners Welcome Center • Purpose & Livelihood Program • Community Education • Memory Assessment Center • Long-Term Care Outreach
Wisconsin Department of Health Services, Dementia Specialist Fox Valley Memory ProjectCollaborators Greater Wisconsin Chapter
Fox Valley Memory Project Memory Cafés
The Care Partners Welcome Center • A Program of the Fox Valley Memory Project • Opened March 25, 2013 • A place to find information and support..… • A place for creative expression and meaningful activities..… • A place to share and learn….. • At the Thompson Community Center • 820 W College Ave., Appleton
Creating Dementia-Friendly Communities • Access to early and accurate diagnosis • Education to reduce fear and stigma • Hospitality extended to persons with the diagnosis and their care partners • Better support for care partners • Understanding dementia as a disability that can be accommodated with patience and kindness
A dementia-friendly community is a place • In which it is possible for the greatest number of people with dementia to live a good life • Where people with dementia are enabled to live as independently as possible and to continue to be part of their community • Where they are met with understanding and given support where necessary Innovations in Dementia (2012). Developing dementia-friendly communities: Learning and guidance for local authorities
People with dementia in England described a dementia-friendly community as one that enables them to: • Find their way around and be safe • Access the local facilities that they are used to and where they are known (such as banks, shops, cafés, cinemas, and post offices) • Maintain their social networks so they feel they continue to belong Innovations in Dementia (2012). Developing dementia-friendly communities: Learning and guidance for local authorities
Five domains to address in developing a dementia-friendly community: Innovations in Dementia (2012). Developing dementia-friendly communities: Learning and guidance for local authorities