Offering help to Alzheimer’s sufferer
For months, she felt like a helpless spectator to her father’s struggle with Alzheimer’s. Plans involving basic logistics would flummox him like a complex battle plan.
But after a pilot programme offered by Action on Alzheimer’s & Dementia proved a huge help, she wanted to share the news with about 1,000 Bermuda residents who have dementia.
The woman, who asked that the family not be identified, said: “My father was persuaded by a family member that it would not be a good thing to be quoted on this.
“That really speaks to the stigma around having dementia in Bermuda — this feeling that you can’t talk about it openly or wash your dirty laundry in public.”
She added: “To extend the metaphor, dirty laundry doesn’t do that well sitting in the corner festering, either.”
The woman accompanied her father to the first of a series of cognitive stimulation therapy sessions led by occupational therapist Marie Fay between January and March.
She said: “Like many others with a recent diagnosis, my father was keen to do what he could to slow the onset or even reverse it.
“The simple task of giving a brief introduction about yourself to a group can be a daunting task for people diagnosed with dementia, an umbrella term that includes Alzheimer’s.
“One man could recall with perfect clarity the date of his arrival in Bermuda but then trailed off precariously and slumped into silence.
“He could not remember what happened next. I glanced at Marie to see if she would intervene to rescue him but help came instead from the other participants:
“‘Give him time,’ my father shouted, and others echoed similar words of encouragement. The awkwardness fell away and the man resumed talking, stinging my eyes with tears of relief.”
The woman said her father “rambled excitedly and sometimes incoherently” when it was his turn to speak — but she added that the joy was no one seemed to mind.
She explained: “That was the magic offered by the course — no judgment and no embarrassment. Marie referred to the sessions as ‘a safe place’ for the participants and she was right.”
Studies have shown that cognitive stimulation therapy improves memory. The results were the same with the pilot programme here. Four of the seven participants showed a marginal increase in cognition, four showed an improvement in mood and three had a better quality of life score.
The woman said her father became less obsessed by details and more joyful. But she added: “I know better than to expect miracles.
“When passing around a card for one of the participants — a strikingly dynamic woman in her 80s who had sadly been hospitalised during the course due to an unrelated condition — some, including my father, struggled to remember her.”
As a group, they played childhood games, sang along to the guitar and baked cookies.
The woman said: “Asked whether they had lived in Bermuda their whole lives, one of them quipped back: ‘not yet’.
“Another took a renewed interest in his appearance, wanting to pick out his own clothing, shave and comb his hair.
“My father talked excitedly about the stories shared by the other members but could not recall any of their names. That did not seem to matter. They connected in the moment.”
She added that having watched her father withdraw from social situations as his confidence ebbed away, it was heartening.
The woman said: “His old friends knew about his condition but they were less inclined to include him in activities.
“People don’t realise the impact of that — invite them to do what you used to do together, arm them with the confidence to go back out in society and break their isolation.
“Excluding them because they have memory difficulties almost does condemn them to a cognitive decline.”
She advised anyone suffering memory loss not to feel ashamed and to get help.
The woman said: “If they’re not forthright with what they’re experiencing, they’re going to get worse.
“It was a huge relief to get the diagnosis because it allowed us as a family to be a lot more supportive and sympathetic. At that stage, we were almost resentful of his behaviour because we didn’t know the medical context.
“What I’ve really learnt with my father is just to enjoy his company in the moment. Sometimes he struggles to make sense of the big picture, but otherwise he’s very present.”
The woman added that the wider community had to show the same patience and understanding that was displayed at the therapy to help affected people to live as full a life as possible.
She said: “I believe people with dementia can live very normal lives if the community gives them the option to participate.
“CST really got people out of their homes, participating, communicating and engaging — there is no miracle cure. But, as far as they can tell, that’s the best thing for dementia.”
• For more information, contact Marie Fay on 707-0600 or firstname.lastname@example.org or visitalzbermuda.com
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