Has Our Society Accepted Dementia as a Legitimate Health Problem?

In my last post, I reflected on caregiver motivations based on research reported in Dementia: A Public Health Priority, the report recently released by the World Health Organization and Alzheimer’s Disease International. In a sense, I took data from a large group and interpreted the findings on an individual level.

Not surprising, since I usually focus on the personal side of caregiving as opposed to its sociopolitical context. But this report included the best of both. After the illuminating discussion about caregiver motivations, the report proposed a model called Six Stages of Acceptance of Dementia – A Civil Society Perspective.

Wow. Either I am too ensconced in the field to see that this is not really that exciting, or the model is in fact über-cool.

(c) Ohio.gov
Image courtesy of Ohio.gov

Keep in mind that I’m not even that crazy about theories unless they can be flexibly applied to the uniqueness of humanity. But here’s what the model proposes:

  • Acceptance of dementia on a societal level is a multi-stage process.
  • Countries are at different stages of acceptance in different parts of the world.
  • A country’s level of acceptance directly affects the support, services and programs available for caregivers.

Check out the six stages:

Stage One: Ignoring the Problem

The society does not recognize dementia as a legitimate health problem that creates challenges for caregivers.

Stage Two: Some Awareness

Occurs when a society first reports dementia in the media and medical professionals begin to provide information to caregivers concerned about their family members.

Stage Three: Building Dementia Infrastructure

The society develops one or more organizations to address dementia. These organizations often hold public and professional meetings, produce literature, and offer support to caregivers through the phone, online or in person.

Stage Four: Advocacy Efforts

Occurs when a society’s dementia organizations realize they need to influence the government and the health care system in order to address dementia’s challenges. They begin to advocate to policymakers, collect data and compile reports to be distributed in circles of influence.

Stage Five: Policies, Strategies, and Standards

The society develops a policy agenda and corresponding plan to address dementia on a societal level. The plan includes better access to services (and ways to pay for them), focused awareness efforts, higher quality of care, bolstering of legal rights of those with dementia, promotion of early diagnosis, workforce skill-building and a robust research agenda.

Stage Six: Normalization

Occurs when dementia is accepted by the society as a legitimate disability and when people with dementia are included in the society to the fullest extent possible.

I like this model because it resonates with the real experiences of people with dementia and their caregivers. As I read about each stage, I could either see evidence of our society having lived it or could envision what it would look like when we do (note my optimism).

The report puts the United States at Stage Four. It lists a handful of countries at Stage Five such as Australia, England, France, and the Republic of Korea. It suggests that Stage Six has not yet been accomplished anywhere in the world.

Do you agree? Does the National Alzheimer’s Project Act put us midway through Stage Five?

I sure hope so. Because looking ahead, a world at Stage Six would be both dignifying and liberating for people with dementia and the amazing people who care for them.

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