Perspectives on Alzheimer's Disease | Alzheimer's Prevention Registry

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March 16, 2018

Perspectives on Alzheimer's Disease

By Banner Alzheimer's Institute Beacon - Family and Community Services

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“We see the world, not as it is, but as we are.”- Anonymous

It is a difficult, yet refreshing reminder that the world is viewed individually.  Every person sees their world from their own vantage point which is shaped by experience, culture, memory, preconceived notions- to name just a few influencers.

In the theory of Ambiguous Loss, Dr. Pauline Boss challenges the typical construct of grief that is often ascribed to caregivers of people with dementia and replaces it with a different viewpoint.  What is particularly salient in Ambiguous Loss are the guidelines which force you to look at ambiguity from different angles- to immerse yourself in the idea, to roll around in it, and come out with a different perspective. 

One powerful influencer of perception is language.  “The everyday language we use to describe dementia shapes our perceptions of brain aging and even contributes to what has been called the ‘social death’ of those most severely affected.” Hearing statements about the ‘Alzheimer’s epidemic’ and the ‘silver tsunami’ connote images of disaster and ruin and inspire fear.   When delivered to the masses, it can shape the perception of broad swaths of the population: Alzheimer’s is the second most feared disease in this country. 

One consequence of fear is stigma where people are categorized negatively because of a condition, or circumstance.  Knowing someone who has dementia, you know much of the inflammatory language is not only inaccurate, but also hurtful.  So what can be done?  What is being done?   

Dementia Friendly America is an ambitious initiative, underway in over 35 communities nationwide, which aims to change people’s perceptions of dementia by transforming the way the community thinks, talks and acts about the disease. To learn more about efforts to make communities more dementia capable, our March 21 Dementia Dialogue  will discuss Stigma, Advocacy & Awareness and feature Jane Gerlica, manager of the Dementia Friendly Tempe (Arizona) initiative.

Language is just one of the perceptual influencers.  Another, arguably, equally as powerful is one’s culture.  Being shaped from the moment we are born, culture imparts shared attitudes, values and beliefs which extend to our perceptions of aging, caregiving and dementia.  Certainly, some cultural perceptions are harmful, but there can be much gained from understanding cultural perceptions different from our own- (which can be equally harmful or helpful.) 

 Consider:

How does your culture view cognitive impairment? 

  • While some adopt the medical understanding of a dementing illness, others perceive dementia as a normal part of aging- simply getting older.  Still others offer the stigma of blaming the person with the disease.

What does caregiving look like in your culture? 

  • Many cultures perceive caregiving as a family affair- though there is variety in the definition of ‘family’ across cultures.  For some, caregiving typically falls to the spouse, while others, the adult daughter is the go-to.  Still others see ‘family’ in the broader community
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