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Practice comment

'We can all do our bit so people with dementia feel included'


I work with people with dementia and their loved ones, helping them access information on essential matters such as support services and living with dementia.

As many nurses know, some people with dementia have strong support networks and a positive outlook, but others are lonely, frightened and isolated. So I wasn’t surprised to learn the findings of the Alzheimer’s Society’s (2012) report, published this week. Based on a major survey of people living with dementia, it reveals some grim results - some 61% have to cope with feelings of loneliness, 77% are anxious or depressed, nearly two-thirds do not feel part of their community, and almost half said their carer may not be getting the support they need.

I know some people with dementia are offered fantastic support, often by nurses and other health professionals on the frontline - but some are not. A lack of training and funding to help health professionals understand people with dementia, a social care charging system that often penalises people with the condition, and a lack of understanding by society as a whole can leave many people out in the cold. They can feel isolated and unable to do the things most of us take for granted - shopping, getting on the bus or visiting the bank.

Imagine a shopping trip on which you can’t remember your pin number at the cashpoint, don’t understand how to give the right bus fare, then forget what you wanted to buy. Without the right help, this experience can feel completely unmanageable. But with just a little assistance, people with dementia can be supported to live their lives to the full. From shopkeepers who know their customers and help them work through their shopping list, to banks that offer a little extra time to support people, to care companies allocating enough time and training for professional carers to do their job well - everyone can help.

The Alzheimer’s Society wants to see every community become dementia friendly and, happily, the movement has already started. In Plymouth, businesses have signed up for specialist talks to ensure staff learn about dementia; in Ripon, a pie shop ensures customers with the condition are helped if needs be; and in Torbay, local businesses are training staff using an Alzheimer’s Society leaflet.

This is not just about businesses or community leaders. While diagnosis rates are improving, just 43% of people with dementia receive a formal diagnosis, delaying treatment and support. We know a quarter of people in hospital and two-thirds of those in care homes have dementia, but if their needs are not met their condition often worsens.

Better training is essential to help all staff in hospitals to understand and work with people with dementia in a more person-centred way and end the prescription of antipsychotic medication for those who do not need it. But every one of us can play our part. It is time we worked together to make sure people living with dementia remain a part of our society.

Ann Jones is dementia support worker, Portsmouth.

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Readers' comments (4)

  • DEMENTIA VILLAGE and much to learn from other countries where dementia is better managed

    "Dementia village

    wants to see a more relaxed and innovative approach to people with
    dementia. “Dementia is normal. It’s part of life. We must learn to live
    with the phenomenon and not to try to sweep it under the carpet,” he
    said. “All too often people with dementia are shut away.“ But
    that is not always the case. The Sonnweid care home in Wetzikon near Zurich is
    regarded as a model: dementia sufferers can move around freely within its
    grounds. The doors are unlocked. Only the garden is fenced. Another idea
    is Switzerland’s first dementia village, based on Hogewey in the Netherlands. It
    will be in Wiedlisbach in canton Bern, and it is hoped to open it in the next
    five or six years. The village will have a medical practice, café, kiosk
    and cinema. The villagers will be able to move around freely within a protected
    area, giving them a feeling of independence. Brigitta Martensson, the
    director of the Alzheimer’s Association, welcomes the project as a good option
    for people with advanced dementia. But Mazander is more
    cautious. “We must think about how we can create the maximum autonomy in
    an open environment, so that people feel that they are living in a village,” he
    explained. He stressed that it’s important that the village shouldn’t be
    cut off from the rest of the world, fenced off behind a high
    wall. "Otherwise you might as well build a large, modern care home, and
    there’s no need to make a song and dance about it.“ For him the point is
    that sufferers should feel free and secure. “And that’s possible, if the
    staff are well trained, specifically for dementia, and if family members are
    involved in the process.”

    Gaby Ochsenbein in Basel, from
    German by Julia Slater)"

    For those who are interested please read whole web page with other interesting information and articles on how dementia is managed in Switzerland and the problems they face

    As well as the Alzheimer Society's excellent web pages Alzheimer Europe is also very interesting and informative.

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  • as the article says, with far better education and understanding of dementia in society and more organised professional and lay support for sufferers and carers from community services and friends, family and neighbours perhaps people could lead far more independent lives in the community which would also cost less in terms of unnecessary hospitalisations and residency in care homes. GPs, nurses, social workers and all other therapists should also have adequaate training and work together in teams to provide care according to need.

    Flat and house sharing with small groups of individuals with dementia supported by professional teams, friends and relatives in their daily activities also works well in helping sufferers maintain as much of their independence as possible and gives them a further choice in lifestyle and continuing to live a more enjoyable and fulfilling life.

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  • I have a training company and one of the reasons why we now provide social care training and why I trained with the Alzheimer's Society to deliver Dementia Awareness Training was because my mother had dementia and I had tried to care for her. However I realised, after she had died from a stroke, and I was half way into my dementia training course that I had not understood what my mother was going through when she started slipping into dementia. My training with the Alzheimers Society made me realise and understand the importance of a personal centred approach to caring - it also helped me understand how a person with dementia might be feeling. How I wished I had had this information when my mother was still alive. It would have helped both me and my mother and would have increased the quality of her life. Hindsight is a wonderful thing! which is why I am now passionate about providing carers with quality dementia training. I feel it is my duty to ensure that people with dementia are cared for by people who understand what they are feeling.

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    anyone involved with dementia care I just thought the Swiss non-verbal communications entertainers Mummenschanz might make good, stimulating and colourful entertainment for some sufferers of dementia. There performances could be obtained on DVD and shown in homes on giant screens. Sometimes they can also be seen live on tour.

    The webpage link above has an English option and there are short videos of the brilliant and highly entertaining performances which are very original.

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