The new columns in Dementia care: Dementia Friendly Communities
One door closes, one door opens.
It is believed that responsibility, when it is shared, cut into pieces and spread out, suddenly becomes more bearable.
This fragmentation of the unbearable can be converted into civic engagement since shared responsibility, beyond one’s personal limitations for the sake of the community, can provoke the many “Is” to become an ideal and united “Us”.
This civic metamorphosis brings many functional changes onto the social surface and into its network, making everybody more aware of the others’ needs.
It becomes a society-level exercise of empathetic abilities with community repercussions.
What are we talking about here? The weight to bear really is an unbearable burden: we’re discussing dementia.
Dementia is an umbrella-term meaning different incurable and chronic brain illnesses which manifest with cognitive dysfunctions – not limited to the field of memory –carrying the progressive loss of personal autonomy and independence (American Psychiatric Association, 2013).
A slow, unstoppable and progressive dismemberment of one’s self, who loses its integral and fundamental abilities.
As Keith Oliver writes in his beautiful new book “Dear Alzheimer’s. A Diary of Living with Dementia”:
“My appearance is largely the same, and when I am remembering to do my balance exercise my walk seems the same. Whilst words sometimes confound me, my voice remains unchanged; despite all of this I feel fundamentally different”.
Now, more than 100 different types of dementia have been discovered and diagnosed, with Alzheimer’s Disease (AD – approximately 50% of dementia cases), vascular dementia (around 10-20%) and Lewy body dementia – the one Robin Williams was silently suffering from – (15-25%) being the most prominent ones.
Over the last decades, massive demographic changes have reshaped civilisation, bearing a staggering increase in life expectancy – e.g. in Italy for men the estimate is now 80,8 years of age and for women it is 85,2 (Istat Review, 2019) and, as a consequence of this, a huge increase of the aged population.
These increases are positive factors per se since they’re the proof that health condition and medical techniques have improved over the last decades, but since dementia is associated with age and is more prominent after 65, these demographic changes have led to a worrying increase in dementia diagnosis, with people receiving a diagnosis also at 20-30-40 years of age, for what is known as “young-onset dementia”.
In the UK, the association Young Dementia UK takes care of their stories and, always in the UK – who’s been significantly avant-garde in the treatment, research and caring for people with dementia, the first Dementia Friendly Communities (DFCs) were born, community-level experiments of horizontal subsidiarity.
To understand what Dementia Friendly Communities are, a video made by the Alzheimer’s Society might help us out.
Dementia is a huge global health issue and the echo of its pain is not confined to the “walls” of the cerebral cortex of those affected by it.
Dementia spreads to the “walls” of the family of those affected and relatives, usually terrified by the certainty of losing their loved one. They try to contain this progressive fall, fighting to keep the pain into certain boundaries and desperately try not to leave their loved one behind leading him/her to the best possible last years of life.
Families know there’s so much more to a person than dementia and that when “one door closes” a brand new door opens and it opens to a totally new chapter in life.
Dementia Friendly Communities assist families in providing what the powerful but not almighty hand of medicine can’t accomplish, widening the restraint borders of dementia to the boundaries defined by the united community.
Thus, the caregiver burden, the sum of care actions put into play by their relatives and partners to help the person with dementia, gets fragmented and the participants of the community become active protagonists in this social caregiving action.
Musicians, police men, butchers, greengrocers, sales assistants, bartenders, newsagents, students of all ages, barbers and hairdressers, peers without dementia, firemen, post-office and banks employees, people working in care settings, street cleaners, hotel concierges, bookshops and library employees: everybody, as in Fellini’s masterpiece “8 and ½” final scene, becomes part of a huge caring circus in which everyone plays a role in caring for people with dementia.
By educating the many active participants of the community on how to communicate, interact, listen to, talk to, be patient and empathically connect with people with dementia, subsidiarity does not remain vertical – from the person with dementia to the caregiver and back – anymore, but becomes horizontal, so that everybody is involved at a community-level, making life for people with dementia and their caregivers much more bearable: a slightly easier Hell to sail.
To obtain this, cities or single districts of big cities wanting to become DFCs should not have more than 100.000 inhabitants, allowing a more thorough control of the psycho-education sessions held for the community and avoiding the possibility of wasting time and resources in an ungovernable and disobedient project.
If you want to become a Dementia Friend and make people with dementia know that they’re cared, the Alzheimer’s Society allows you to do it from anywhere in the world: you might become part of a huge global Dementia Friendly Community. If you do so, remember the 3 core values of Alzheimer’s Society: We get it, We are united, We will do it.
Omar Ferro, Project Manager NeuroPhilia