When Frena Gray-Davidson first heard of Alzheimer’s disease, she couldn’t spell it and didn’t know what it was.
Fast forward a couple of decades and she is now a prolific writer of books and articles on the Alzheimer’s and dementia, and advises carers of people with dementia all around the world.
In Cayman this week to hold a series of workshops, Ms Gray-Davidson is giving practical pointers and advice to caregivers.
She got involved with Alzheimer’s, a type of dementia, entirely by chance.
Having been brought up in the UK, before living in Asia for 15 years, she relocated to Berkeley, California, where she tried to find somewhere cheap to live. “I happened on this great deal. I was going to get free food and lodgings and all I had to do was help look after an old lady with something I could not spell and had never heard of before. It turned out to be Alzheimer’s,” she said.
When she first met the elderly German Jewish woman she was to care for, she immediately found her charming and interesting.
She went along to the Alzheimer’s Association and to some seminars to try to learn more about the disease, but found the “doom, gloom and despair and the demeaning way of looking at dementia” depressing. “I thought about the lady I was living with. My take on it all was nothing like that. I realised she was impaired to an extent, but she was a fine human being still,” said Ms Gray-Davidson.
She approached caring for the elderly woman much as she had approached learning about different cultures from her time as a travel writer in Asia. “I decided I’d learn the culture of Alzheimer’s from someone who had Alzheimer’s and that’s what I did. I would say that, from then until now, I’m still learning the culture of dementia from people who have it, much more than anyone’s opinion about it. That gives me a useful, different view of it because I don’t see, perhaps, the ugly, terrible things people say about Alzheimer’s [sufferers] – that they’re the ‘living dead’, ‘empty’, ‘gone away’. It may be that the aspect of a person has changed almost beyond recognition, but these people haven’t gone away; they’re still there, they’re still living.
“The more you’re willing to get to know them in this new aspect, the more you’ll realise there’s an awful lot there, it’s just not shown in the ordinary, everyday way we expect them to show themselves.”
She said that leaving the UK in the early 70s, when no one was talking about Alzheimer’s and spending 15 years in Asia, where again, no-one was talking about the disease, she had no knowledge of it and its “bad publicity”. “If I had, I bet I wouldn’t have taken that free apartment… I suppose I would have been negative about it, but I hadn’t heard about it and it was all new to me and I found the things she did fascinatingly interesting.”
She said: “For some strange reason, people with dementia make sense to me… I’m always interested in what they’re doing and I try to figure out what’s happening and why they say the things they say and do the things they do.”
Unlike others who have known and loved people before they developed the disease and think they are now “lost” to dementia, Ms Gray-Davidson said by the time she gets involved with those people, the disease has already developed and, therefore, she does not do a before-and-after comparison.
Ms Gray-Davidson said people with dementia have an enhanced creative side, a great sense of humour, a strong ability to love, and “a very good radar about emotions”. It’s that “radar” that can stir the anger, agitation and even the violence that some carers report seeing in dementia sufferers, as people with dementia often reflect back the emotions being shown by their carers and people around them.
She said carers and family members of dementia sufferers need to forget about the past and their own feelings about how a person used to be when dealing with those they are caring for, but instead focus entirely on the present.
Ms Gray-Davidson, who points outs that she is not a medical person, rather someone who has for more than two decades worked with people with dementia and who has trained caregivers, has written five books on the subject of Alzheimer’s and dementia. Her latest book is “Speaking Dementia: Making Sense of It All”.
Working with people with early onset dementia and elderly people with the disease for many years has given Ms Gray-Davidson an insight into how their memory works. She said elderly people, those without dementia, often have hyper early-life memories, remembering things that happened when they were very young in great detail. People with dementia also have that hyper early-life memory, which leaves them confused when they have no short-term memory ability to counter them.
She explained that there are two approaches to caring for people with dementia – oppositional and companionable.
Some carers try to oppose the disease, challenging and correcting the dementia sufferers, trying to “fix them”, said Ms Gray-Davidson. That simply does not work, she said.
The other approach, the companionable one, involves accepting that one is going on a journey with the dementia sufferer – talking to them, listening to them, being a companion.
She said there’s no need to correct what dementia sufferers say.
Describing a typical situation with which many carers of dementia sufferers will be familiar, she said: “One elderly lady I knew used to ask me every evening, ‘Are my parents coming to dinner?’. I would reply ‘I have no idea, Nobody told me.’ One day she came into the kitchen and said ‘I want to know if my parents are dead.’ I don’t believe in lying to people with dementia. I do believe in evasion, persuasion, manipulation, but I absolutely don’t believe in lying. So, I told her ‘yes, your parents died some years ago.’
“She started wailing and went to her bedroom and I could hear things slamming and banging. Then the front door slammed. I followed along behind her and she was stomping down the street. After she turned a few corners, she slowed down, got back to her front door and went inside. I sat down on the wall outside and waited till about 10 minutes had passed and knocked on the door, and she answered and said: ‘Oh, it’s you. So good to see you.”
She explained that the impaired short-term memories of dementia sufferers means there is no need to correct information they get wrong or to give them upsetting news, because they will forget it moments later.
Ms Gray-Davidson prefers to use the term “dementia” rather than Alzheimer’s, partly because the idea of Alzheimer’s seems far more frightening to people than dementia. There are many forms of dementia. The Alzheimer’s Association in the United States estimates that one in eight people over the age of 65 in the US has Alzheimer’s.
hold a workshop at the All Nations United Pentecostal Church in Woodlake Drive,
George Town at 7.30pm on Thursday, 29 March at 7.30pm and another one at the
Seventh Day Adventist Church in Savannah at 3.30pm on Saturday, 31 March.