Dark age

The biggest myth about dementia is the widespread perception that it’s a case of ‘them’ and ‘us’, believes Victoria Metcalfe.

As dementia specialist team manager for Anchor Trust, Ms Metcalfe knows that many of ‘us’ will develop dementia as we grow older. Because of the UK’s ageing population, the number affected is set to soar – last year, an Alzheimer’s Society report warned that the number of people with dementia will rise rapidly, from 700,000 to 1 million in less than 20 years.

This is a conservative figure because many people with dementia remain undiagnosed. Research shows that, on average, people wait three years after the onset of their symptoms before seeking help.

The Dementia UK report, prepared for the Alzheimer’s Society by the London School of Economics and King’s College London, also revealed that dementia currently costs the UK £17 billion a year and said urgent action was needed to plan for the escalation in dementia over the next two decades.

At the launch of the report Neil Hunt, chief executive of the Alzheimer’s Society, called for a national dementia strategy. ‘We need to tackle this huge challenge head-on. Planning now will save lives and money in the future.’

The government appears to have taken heed and is consulting on its draft national dementia strategy – the first of its kind. It is due to be published in the autumn. Welcoming the government’s plans, Mr Hunt said it was ‘time to drag dementia out of the dark ages and change the way we treat some of our most vulnerable older people’.

Many housing organisations are already responding to the challenge and are grappling with the implications of the rise in dementia in their area of the country.

‘Raising awareness about dementia is vital,’ says Ms Metcalfe, who is also a trainer with the Alzheimer’s Society. ‘We should treat people as individuals: no two people with dementia are the same. We can only provide the best care and support when we have focused on each person and discovered what is best for them.’

Expert help

A recommendation in the government’s draft strategy highlighted the need for informed and effective workforces to care for people with dementia. Anchor’s specialist teamwas specifically set up in response to the increased number of people with dementia who are either living in the trust’s homes or accessing its services.

Team members are located throughout the country and each member has their own area of expertise, including communication techniques, understanding behaviour, food and nutrition, and design and environment.

‘We promote person-centred care in order to make the experience of dementia less distressing,’ Ms Metcalfe explains.

Already, the team’s advice and support to frontline staff at Anchor has helped residents with dementia stay in their own homes rather than go into a nursing or care home.

‘Sometimes it can be quite a simple thing,’ says Ms Metcalfe. ‘One worker noticed that a resident became very distressed when his yellow sheets were changed for white ones. He was using the yellow sheets as a way of identifying his own bed.

‘People with dementia can sometimes disturb other residents when they start walking around or banging on doors, but if their own door is clearly identified with a sign which is unique to them they will usually become calmer as a result.’

The specialist team is in the process of providing dementia awareness training for all Anchor staff, with more detailed courses available for those working on the frontline.

‘The range of services offered by Anchor – nursing and care homes, supported and sheltered housing – means that we can cater for people with different levels of dementia. We try to encourage people to live independently but there will come a time when intervention is necessary and part of the team’s role is to educate staff so that they know when it’s time to step in.’

Allowing people to stay in their own home for as long as possible is a key part of good dementia care. Housing 21 has recently secured money from the King’s Fund to pay for a specialist community-based end-of-life nurse.

David Williams, head of dementia services at Housing 21, says: ‘If we had a choice, most of us would prefer to die at home. This is especially the case with people with dementia because they can become very distressed if they are removed from their usual surroundings.’

Springboard Housing Association, part of Genesis Housing Group, is working in partnership with local community services to help residents with dementia sustain their tenancies.

Supported housing manager Maggie Duffy says housing associations can take a major step towards supporting customers with dementia by looking at their services, finding out what resources are available in the community and working with partners to fill the gaps.

‘Housing customers with dementia can be demanding but also very rewarding. With the right staff team and the right training, there is no reason why people cannot continue to live in a supported housing environment,’ she adds.