Public Narrative

Public Narrative is the Foundation's emphasis on promoting culture change via education and public policy, thereby reducing the stigma which often accompanies a diagnosis. This stigma has been shaped by our society's public narrative (collective story), a model that illuminates despair as its main theme. The ISHF is creating a public narrative based on a model of hope - in which people with dementia have a future, can remain in their communities and contribute to society. 

Caregiver as Sufferer: Current Model of Despair

Caregiver-Sufferer Paradigm: A caregiver gives a sufferer care.  The sufferer returns the favor with burden (measurable by the widely-used burden scale).  The caregiver repeatedly provides the sufferer with care, receiving burden in return.  This repeating iterative care-burden exchange continues until the caregiver reaches “burnout.” Although this downward spiral can be slowed down and prolonged with support groups, day centers, and other respite programs, the message is clear—there is nothing but inevitable despair to look forward to, so let’s make the best of it.

Harvard Kennedy School Professor Marshall Ganz points out that in all public endeavors, people have a choice whether to accept a predominant negative mind-set, or to develop a more positive one—what he calls a public narrative of hope.  Not a blue-sky idealist who believes that hoping alone will achieve positive results, Ganz defines “hope” in applied terms, not spiritual ones. Hope, to Ganz, can be summed up as WCMAD—We Can Make A Difference.  To Ganz, a public narrative of hope is a call to action in which curiosity about what is possible naturally leads to creative solutions.  This is the basis of all It Takes a Village dementia programs—borne out by the observable and measurable outcomes of the programs the Foundation has been running for over a decade.

Community-wide dementia-friendly programs, even evidence-based ones, present their own challenges.  Building a community-wide hopeful dementia constituency requires overcoming natural barriers to participation closely linked to the fear and stigma that presently surrounds Alzheimer’s and dementia. These barriers emerge as “reasons” people use for not taking advantage of free community programs. Among these are that the person won’t enjoy the event because they will just forget it soon afterwards, that it takes such an effort to get outside so better just to stay home whether in a family home or assisted living, that arranging a group visit to an event in the community can so disrupt set routines and staffing plans at nursing homes that it just isn’t worth making the effort.

Fear-based excuses, like these, turn into “threshold” barriers—justifications for not participating in community programs, for not stepping over the threshold of where a person with dementia lives.  Each excuse is linked to one of seven stigmatized perceptions of people with dementia, all of which are in turn linked to the predominant narrative of dementia despair.  The narrative of hope among people with dementia and their care partners reverses the negative image, making it easier to overcome the threshold barriers that prevent community participation by.  In fact, for success of such programs, developing a community narrative of hope is an essential requirement.

The following table sums up the significant differences between the predominant and widely accepted stigmatized despairing view of dementia and the growing hopeful view necessary to increase community participation.

Stigma & Despair—Threshold Barriers to Community Participation

 

Stigma, Despair & Barrier to Participation

Hope, Actual Experience & Community Participation

1

They can’t remember

Do remember things that are important to them; that mean something in their lives

2

They have no attention span

Can focus for a long time on events and conversations that are individually meaningful

3

They always get to an aggressive phase

Have low impulse control so express strong feelings when confronted—don’t confront.  If someone is not aggressive it is because those who love them are doing the right thing

4

They lose their identity / don’t know who they are / they have no self

Always have a sense of self that can be reinforced in their environment and in relation to others who carry their life story

5

They can’t enjoy events because they forget them

Can enjoy like all of us who often forget the details of a pleasant experience while remembering what we felt

6

They can’t make any decisions

Can make informed choices when presented with clear straightforward alternatives

7

They can’t learn

Can learn when information and skills are presented procedurally—actually demonstrating rather than using words to describe the skill

 Copyright 2013, I'm Still Here Foundation