Dementia: A Feared Diagnosis and the Emotional Journey

I attended a lecture on Long Term Care Placement from the Perspective of a Caregiver a few days ago at a local private non-profit Alzheimer’s organization. Even though I am a professional, I wanted to further learn the process from the caregivers perspective. Although the placement process was focused here on the province of Quebec, much of the information shared about the emotional journey, the questions to consider in readiness for placement was for everyone, anywhere.

Someone you know and love has been diagnosed with Dementia. Now what? A plan needs to be created. Caregiving whether informal or formal decided upon by family, friends, public and private sector professionals with the choices of: at home with assistance coming in, a residence or LTC (nursing home).

• One question at a time-do the evaluation in stages and start the process early.
• What can the person diagnosed with Dementia still do on their own?
• What do they need help with?
• What is their cognitive state?
• Has their condition deteriorated, health wise?
• Can the person with dementia be part of the process as in what are their thoughts?
• Pay attention to non-verbal cues as well.
• Do you wait until the person who has dementia has progressed to the point that cognitively they do not understand and will not resist placement?
• As a caregiver, what are you values and preferences re: placement?
• For the one with dementia, what are their values and preferences?
• Legalities re: paperwork and who makes decisions needs to be decided, power of attorney or mandate by all involved.

• For those who are not the official caregiver, avoid criticizing the main caregiver.
• Listen, work as a team to discuss the various wishes.
• Budget cuts and a lack of funding for local health services and what this means for support services like local Alzheimer’s Associations & organizations, support groups, lectures and presentations along with turning to the internet to learn about the disease, what to expect, i.e., symptoms and characteristics of the disease are important.
• Acknowledgement by the family that this is happening and real!

One of the most difficult tasks is for the family whether child, parent or spouse, is to go through your own emotional process or you will have great difficulty in making these future decisions. ‘Losing’ a parent, spouse or child to Dementia has its own grieving process. The person is not who they once were. They cannot do for themselves what they used to do. The memories slowly disappear along with the ability to recognize family and friends-none of this is their fault and is part of the disease, but as an onlooker is hard to witness and be part of.

“It was vital for me to recognise that Alzheimer’s (the underlying cause in Mum’s case), debilitating and horrible as it is, also brings moments of catharsis, laughter and joy. The key was the realisation that the source of my overwhelming sadness had little to do with her. It stemmed from either my comparisons with the past, my anxieties about the future, or my fear over my own eventual frailty. The result was that I was missing being in the present, and upsetting her by lacing our time together with regret and sadness. I was treating her as already incapacitated, not truly being with her even though we were in the same room. She would talk to me, but all I could hear were my own questions: where is the woman I knew so well? What happens next? But when I managed to switch off this destructive internal dialogue and be with her in the “now” (which is what people with difficulty in forming short-term memories do a lot of the time), we actually had a blast.” – Alex Andreou