| The dementia rugby tackle |
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That’s where you both go down, writes Louise Morse  They were having a cup of coffee and watching television, when Joy’s mother turned to her and asked, “Where’s Joy? I haven’t seen her for days.” Without missing a beat Joy replied,“Oh that Joy! Now let me see, it’s Thursday afternoon; let’s see if we can remember what she does on a Thursday afternoon.” The next few minutes were a sort of verbal ping pong as Joy tried out topics that would engage her mother in conversation. She was not hoping for instant recognition, because her mother suffers from dementia, but was trying to use the moment to establish some sort of connection. It’s worth it: sometimes her mother tells her she is special. Joy’s mother is one of the 820,000 people in the UK diagnosed with dementia. The Alzheimer’s Research Trust (ART) estimates that in just a few years’ time the lives of one in three people in the UK will be impacted, either as a relative or friend or caregiver, or sufferer. One husband said the dementia diagnosis is like being rugby tackled, “where you both go down”. Despite its tsunami proportions, dementia is poorly understood, even by family doctors. A survey by a national newspaper in 2008 revealed that 49 per cent of GPs felt they didn’t know enough to be able to give a diagnosis: 29 per cent saying they wouldn’t give one anyway, because there is no cure. So what is dementia, exactly? Dementia is the syndrome, or set of symptoms, the person experiences as the result of brain damage. It can be caused by the plaques and tangles of Alzheimer’s disease, or it can be Vascular Dementia, where there is a decrease in blood supply to the brain, most commonly from a series of small strokes. There are dozens of illnesses that lead to dementia, including AIDS, Parkinson’s, alcohol abuse, head trauma, brain tumour, thyroid dysfunction, Lewy Body disease and Huntingdon’s. Dementia isn’t an inevitable part of old age: many older people stay sharp right into their nineties and beyond. The best preventatives are a good (Mediterranean) diet, social life and exercise. Studies have suggested that people who feel lonely and isolated have a 47% higher risk of developing dementia. The hidden patients What we don’t hear about are the effects on the caregivers. They’re usually spouses or other family members. Struggling to cope 24 ho  urs a day, caregivers become the ‘hidden’ patients. They just drop off the radar. Peter Vitaliano, a professor of geriatric psychiatry at the University of Washington and an expert on caregiving, compared the level of stress hormones in caregivers with those with post-traumatic stress disorder. Probably the most distressing aspect is the complete change in the loved one’s personality. A despairing wife said, “Every morning I wake up and look over and see Jack, and think of our long life together. I think how much I love him. Then he wakes up, and it’s not Jack.” Another wife said, “I coped OK until the day he didn’t know who I was. I lost it when I became this stranger.” Linda, the wife whose story is told in Dementia: Frank and Linda’s story, was devastated when her normally gentle husband tried to strangle her. What’s going on? If our personalities were the result, in part or in whole, of the brain we genetically inherit then, when the brain died, so would we. It would be ‘lights out’ for us, the end. But the story of Jesus and the Cross is that there is life after physical death and, by the sound of it, a better life than most people currently enjoy. Our brains, like the rest of our bodies, are the controls that we use to help us express ourselves and interact with the physical world. The spirit of the person, that essential him, or her, remains the same, even with the dementia, but the challenge now is communication. Recognising this, new, ‘counter-intuitive’ approaches have sprung up that build bridges by linking to the person’s past experiences and core beliefs. In playing verbal ‘ping pong’, Joy was looking for those past experiences where they could make a connection. Her mother wouldn’t feel guilty or frightened because she couldn’t recognise Joy today, but would feel pleasure in reminiscing about a time with her daughter in the past. Caregivers need advice and training, and your GP or social services department can put you in touch with a memory clinic that can help. Also, the Alzheimer’s Society has helpful information on its website, and can arrange for an Alzheimer’s volunteer ‘befriender’ to visit and offer help if there is one in your area. If you go to church, ask your church and home group to pray regularly for you, and ask someone to keep you up to date by visiting regularly. Books that help are Could it be Dementia? Losing your mind doesn’t mean losing your soul (Louise Morse, Lion Monarch 2008), Contented Dementia (Oliver James, Random House, 2008) and Still the Music Plays, (Dr Graham Stokes, Hawker Publications, 2008). |
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