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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