Sunday, November 30, 2014

Webinar: The Experience of Spousal Caregivers of People with Early-Onset Dementia

These are excellent webinars!

Two variants in fronto-temporal dementia:

1) Behavioural FTD variant: belligerent, changes in personality and social conduct. Social, sexual, aggression are possible. It can be embarrassing for caregivers. Disinhibitions can manifest, as well as the literacy issue. There is a lack of inhibition, and clients can steal while out shopping, which results in caregivers having to talk their way out of trouble. Having to manage bodily functions, on the part of the caregiver, such as changing adult incontinence products for a spouse.

2) Language Presentation: Literacy issues; language influency, deterioration of grammar, nonsensical sentences, semantic and logopenic aphasia. It can be both oral and written language, literacy issues. My late father, who had a brain tumour in the language area, had these symptoms. He could no longer draw up nouns, then he lost the ability to read.

The Experience of Spousal Caregivers of People with Early-Onset Dementia

Shnall also covers coping strategies and stages of caregiving. The impact of EOD is terrible on people with young families. In some cases schools refer the family to CAS, without support for the caregiver. People do not question someone who is rude, in power, still driving, demonstrating social disinhibitions. Family physicians fail to diagnose EOD in some cases and blame family dynamics or a spouse for behavioural aggression, yelling, confrontations.

One risk of EOD is unmanaged pain. My father denied his pain all the time. They ask a patient if they are in pain, and they deny and do not understand the concept. Governments may refuse to grant a disability claim, since EOD is not 'fatal.' This provides tax relief.

Extended families are typically unsupportive, as they do not understand, or fear dementia symptoms. Some can be in denial, some fear their own mortality. Caregivers succumb to depression in such cases. Financial obligations can compound the issues, if it is the patient or caregiver must give up earning a living, and the patient requires long-term care.
Adriana Shnall, PhD, RSW

What helps?

  1. Short-term planning
  2. Advocacy
  3. Reframing
  4. Self-care
  5. Spirituality or religion.

Implications for support workers

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