Events | 2010.03.21
Dealing with dementia | Megan Rowling
My father\'s early-onset Alzheimer\'s has not stopped him enjoying life. The blight is more often others\' fear and ignorance
Dementia is sad, scary, debilitating, degrading and on the rise among our aging population. Yet I\'m smiling as I write, recalling a recent evening with my dad, an agricultural botanist with a PhD, who was diagnosed with Alzheimer\'s three years ago at the age of 59. We were speculating, glass of wine in hand, about whether he and a friend could get away with using his personal care budget to take the presenter of a popular TV show about the countryside out for lunch.
Of course, we were just bantering, but that\'s what we do; it\'s what we\'ve always done. My father – Rob Rowling, 62 – spent his career breeding new types of grass for sporting venues, including Wimbledon. Now he struggles to tend his tomato plants and lemon trees. He kept the allotment going as long as he could, but gardening requires co-ordination, and that\'s the part of him that was hit first by the disease. But his sense of humour is still going strong.
My father and his wife, Tish, who retired early from her job as a biochemist to care for Rob, often find that people with no experience of dementia have very little understanding about the condition. Being a younger person with dementia (defined as under 65) brings special challenges. How would you react, for example, if you were waiting for the toilet on a night out and spotted a couple in their early 60s emerging from the disabled loo? At a beer festival in Canada last autumn, Dad and his wife were insulted by a fellow attendee who thought they were queue-jumping. It\'s something they\'re getting used to, as dementia fails to curb Dad\'s enthusiasm for real ale, travel and music.
Supermarkets can be tricky, too, as Rob might pick up items from someone else\'s basket or wheel off the wrong trolley. A woman the couple know apologised for her husband when he pushed in front of another shopper, explaining her spouse had dementia – only to be told it didn\'t look like it.
My parents\' day-to-day experience of living with dementia suggests we should think twice before judging behaviour that seems odd or rude – tricky, perhaps, during a chance encounter. But a survey commissioned by the government and the Alzheimer\'s Society to support a public-awareness campaign launched this month reveals a deeper level of discrimination against people with dementia. One in three said they would find it difficult to spend much time with someone affected by the condition, and more than half said they did not know enough to help someone who has it.
According to the Alzheimer\'s Research Trust , 25 million people – 42% of the population – have a close friend or family member with dementia. Yet, while the public is sympathetic, they are also "terrified", says the Alzheimer\'s Society\'s Linda Seaward. "Most people\'s perceptions are of an old man or woman at the end of their life sitting in a big chair in a care home. And that\'s very scary."
People with dementia often feel isolated and stigmatised. Friends may no longer want to sit next to the person affected at a dinner party, for example, or might even stop inviting them out altogether. Worse, much of the discrimination is ignored because dementia often prevents sufferers from voicing their feelings and needs.
This month\'s advertising campaign encourages the public to overcome their discomfort and help those with dementia pursue the activities they enjoy for as long as possible. The campaign highlights ways to help those living with the condition, including focusing on what they can still do rather than what they can\'t.
In Saturday\'s Guardian, Alzheimer\'s expert John Zeisel offers useful tips for interacting with a person with dementia , alongside the refreshing view that relationships don\'t end but evolve. But, as the daughter of someone with the disease, I struggle with Zeisel\'s argument that a diagnosis should be regarded as a gift rather than a sentence. It\'s the kind of gift you\'d want to take back to the shop pronto. Since you can\'t, you do your best to live with it.
So far, my dad and his wife have kept up their social life including country rambles, evenings in the pub with friends and trips in Britain and abroad. At first, they tried to hide Dad\'s illness, but have come to realise it\'s nothing to be ashamed of. A year ago, they gave an interview to their local newspaper , the Stamford Mercury, describing their determination to carry on travelling the world and indulging their hobbies for as long as possible. Tish says people in the Lincolnshire town recognised them and spoke to them about the article. Staff at the gym Dad goes to watch out for him and give him a hand if he can\'t operate the equipment. As a result, the former rugby player doesn\'t feel anxious about exercising and has stayed fit. But that level of engagement is rare.
Tish hopes greater public awareness will make people less frightened and more patient when interacting with someone with dementia:
"We didn\'t know anyone in our situation until it happened to Rob. That\'s not going to be the case as more and more people get dementia. Then they are going to want to know more."
According to Alzheimer\'s Society research, the number of people with the condition in the UK will rise from 700,000 to nearly 1 million in less than 20 years, and 1.7 million people by 2051. We have a lot to learn, fast – but let\'s at least try to have some fun on the way.
For more information, please visit
http://www.guardian.co.uk/commentisfree/[...]mers-dementia-public-awareness
