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 PrintableVersion Losing it?The government's dementia strategy and churches' unique opportunityThe government’s new strategy is like the proverbial curate’s egg — good in parts but bad in others, according to the authors of the best-selling book, Could it be dementia? Losing your mind doesn’t mean losing your soul. Dementia is an umbrella term for a condition that affects the brain, leading eventually to death. There are over 100 causes of dementia, the largest being Alzheimer’s disease at over 50%, and vascular disease. Over 700,000 have been diagnosed in the UK and, according to a YouGov poll, the lives of 25 million people are impacted in one way or another. ‘The government strategy is good, in that it wants to address the stigma and ignorance that still surrounds dementia and in helping to get early diagnoses’, said Louise Morse, Communications Manager for Pilgrim Homes, ‘especially when you consider that thousands of people are living with the condition without ever having received a diagnosis. ‘But although it promises better training for GPs in spotting the early signs, it ignores research which shows that 60% of GPs are reluctant to give a diagnosis because there is no cure, and very little help they can offer. Denied medication‘The only medication known to be clinically effective in the early stage is denied to people by the NHS because of a ruling by the National Institute of Clinical Excellence (NICE) in 2007. Aricept costs around £2.50 a day, but NICE decided it was not cost-effective. People who can afford it purchase it themselves. One famous sufferer, author Terry Pratchett, described it as “a line of sandbags against the rising tide of unknowing”. If it continues to be denied in the early stages, the temptation will be to hold off diagnosis until the disease has progressed to the moderate stage, when GPs can prescribe it on the NHS.’ Memory clinicsGovernment plans include setting up a Memory Clinic in each town, where patients can get information about their condition, as well as learning techniques for improving their memory. But knowing there is no cure for dementia, unless the clinics contribute to patients’ sense of wellbeing, they are unlikely to succeed. ‘In our experience, patients have two crying needs: one is to be understood and the other is to feel they are still significant, and included’, said co-author Roger Hitchings (a pastor as well as an expert in the care of people with dementia). Opportunity for churchesThe other huge need with dementia is care for the carer. Out of 700,000 dementia sufferers in the UK, only a third are in residential care. The other two-thirds are cared for at home, often by an elderly spouse. They often have to battle for even the smallest help from their local authority. ‘Your life just disappears, your family disappears and your friends. You are left alone just doing the best you can’, said a former doctor’s wife in a BBC interview. ‘Caregiver syndrome’ is now a recognised condition, characterised by stress, chronic fatigue, anger, guilt, and depression, brought on by unrelieved, constant caring for a person with a chronic illness or dementia. It takes an average of seven years off carers’ lives. ‘Caring for the carer, and tackling stigma and ignorance are two issues that actually give us, as Christians, a truly unique opportunity. With very little effort, churches in the UK could take the lead here. We devote whole chapters in our book to simple steps pastors and churches can take that not only match scriptural principles but will revolutionise thousands of lives. Practical things that are easy to do, if there is the will to do them. We could come to the stage where it could be said of us, “See how those Christians love one another!”’ said Roger. He is often asked to talk to churches about dementia, and the most common comment he receives afterwards is that people say they have a new view, one which is less intimidating, because they know the facts and hear of practical approaches and spiritual realities. ‘That is why people love the book’, he says. Caring at homeDementia currently costs the UK economy £17 billion a year, a sum that will increase as the number of cases rises to an estimated 1.4 million by 2030. In the last few years the government has slashed funding for residential care for the elderly, and its dementia strategy is to keep people in their own homes for as long as possible. We would all like to end our lives in our own homes, but, without real support, as the condition worsens, the reality is that residential care is the best option: where the carer is an elderly spouse, and physically can’t cope any more or has to go into hospital himself; or the sufferer would be at risk in their own home because their capacity is now so diminished; or their home isn’t secure enough to keep them from wandering; or they are so frail they need constant care, 24 hours a day. I write from experience of Pilgrim Homes’ care homes where, instead of one or two carers at home, stretched beyond belief, there are teams of carers who come in fresh for each shift. They are trained extensively in dementia care, and our homes are steeped in our Christian values and ethos. ‘Don’t abandon me’For Christians, spiritual support is vital. One of the most moving messages from a dementia sufferer was given by Christine Bryden at a conference in 2005. She said, ‘As I travel toward the dissolution of myself, my personality, my very “essence”, my relationship with God needs increasing support from you, my other in the body of Christ. Don’t abandon me at any stage, for the Holy Spirit connects us. … I need you to minister to me, to sing with me, pray with me, to be my memory for me … You play a vital role in relating to the soul within me, connecting at this eternal level. Sing alongside me, touch me, pray with me, reassure me of your presence, and through you, of Christ’s presence.’ The principle of Matthew 25.35-40 is crystal clear. People suffering with dementia need exactly the help the Lord describes in these verses. I like to think that, when they meet face to face, the Lord will smile and say to the people who have helped care for his precious pilgrims with dementia, either directly or through their caregivers, ‘You did it to Me’. Until there is a cure or ways of prevention, people will continue to struggle with dementia. Pilgrim Homes has been serving older Christians for 202 years, and we are happy to share our experiences and expertise, and our website now has a message board for people to leave questions and share their experiences. Louise Morse
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