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‘Rather than shrinking away, they’re standing tall and saying, “Yep, I’ve got Alzheimer’s and I’m still here. Talk to me!”’

Owing to the complexity of even this single aspect of the disease, my comment will necessarily be long; I hope the reader will bear with me!

For over a decade now I have been employed first as a paid direct caregiver for elders labeled with AD, and as a staff/family caregiving trainer. Prior to that I served adults with severe autism and developmental disorders, and was trained as a behavior specialist at the UO’s Center on Human Development and numerous state agencies. I hold a recent master’s with a gerontology focus, and am currently researching and writing on the social and cultural construction of/response to mental disorders, including Alzheimer’s and other dementias. I continue to advocate strongly for persons labeled with mental disorders.

During my full-time (actually, they were 60+ hour weeks normally) direct-care work with hundreds of elders and their families dealing courageously with Alzheimer’s, I never once heard or read of ANYONE saying such a thing.

While I understand people’s desire to put a happy face on this devastating disorder and show promise for the future, we still obviously have quite far to go yet before we can say we have an effective treatment; I also understand the need for families and affected individuals to obtain an accurate diagnosis (i.e.-”label”) for their disease, and to increase their knowledge of it in general.

However, my professional advice, if requested, would actually be exactly the opposite of the above…

Meaningful socialization has been shown to be one of the most effective ways of mitigating the progress of many mental illnesses, including dementia. Unfortunately, much of the public at-large, and even a surprising number of paid and unpaid caregivers still do not understand this extremely complex disease (one that has great social, as well as personal/familial ramifications)well enough to avoid the many pitfalls in the path to supporting those so labeled.

There are many reasons for this; perhaps none so key as the fact that the biomedical profession ITSELF is still trying to understand it! Another reason is that, given the urgency and complexity here it is hard for anyone to distill factual “truths” about this disease, or ANY mental affliction, for that matter. The simple truth is that until one experiences the disorder first-hand, one can only BEGIN to know what living with the label and disorder means…

For that reason, it is very easy for us to project both our fears AND our hopes on the person or collective so afflicted…and neither projection will be helpful if it is inaccurate or misplaced.

Therefore, I believe that for now and for the immediate future it would be in everyone’s interest (not least the person carrying the label of Alzheimer’s) to keep the label of “mental disease” as confidential as possible. In my direct experience (and many studies on labeling and mental disorders support this) those NOT knowing the elder has this label greatly increases the likelihood that the person will have more “normal” (or meaningful)and personally satisfying social interaction, being at least temporarily free of the insidious effects that labeling and projection may bring about.

Mentally disabling conditions, for the reasons given above, are amongst the most difficult to comprehend and treat. They are also the most demanding in terms of caregiver expertise, stressors, and resources…both public and private.

Continual education and revision of our existing knowledge is essential for all of us, professionals as well as laypersons. Because I include myself here, I offer the above only in the spirit of all of us working together to do our best for those affected by these highly complex diseases.

I welcome any/all responses to what I have written. My email address is macpics11

Most sincerely,

Charles Macknee, MA