As the baby boomer generation ages, it will present some expensive challenges to services for people with dementia. Alison Moore reports

As the baby boomer generation ages, it will present some expensive challenges to services for people with dementia. Alison Moore reports

When The Beatles sang When I'm Sixty Four in 1967, old age was probably far from the minds of many of their fans. But the baby boomer generation which helped to define the 1960s is now looking retirement in the face.

Sir Paul McCartney, who wrote those lyrics, turned 64 in June 2006. The first of the post-war generation will be 65 in 2011 - and for many of them love will not be all they need, but also long-term care.

In many cases, that care will be for Alzheimer's or another type of dementia. The proportion of people with dementia rises from one in 20 for those who are 70-80 to one in five of those over 80. The absolute numbers with dementia in the UK are expected to rise from 750,000 now to 870,000 by 2010 and to a massive 1.8m by 2050.

'It is going to be a massive challenge to the NHS and social care system,' says Jonathan Ellis, senior policy manager at Help the Aged. That challenge may not hit immediately. Philip Hurst, Age Concern's policy manager, says that for some time we will see baby boomers in their 60s looking after elderly parents.

Boom and bust

The first of the baby boomers will turn 80 in 2026. As more develop dementia, the NHS will be affected in two ways. First, it will have to care for a greater number of people with dementia.

Second, there are question marks over whether the same level of informal care - typically from partners, children and other family members - will be available. This informal care plays a crucial part in keeping patients with mild and moderate dementia out of long-term hospital or nursing home beds.

The fear is that smaller family sizes mean there are fewer children to assist with elderly parents. Rising rates of divorce in the second half of the 20th century may also mean more people live alone. Elderly parents and their children sharing a home is becoming less common too, and the greater proportion of women in the workforce - and the need to work for longer rather than taking early retirement - may mean women are less able to care for elderly relatives. Also, the tendency towards having children later may mean many people having parents in their 70s at the same time as relatively young children.

The NHS cannot realistically plan for 2050 and even 2026 is nearly 20 years off. But in four years it will probably need to care for nearly 20 per cent more people with dementia. Is there evidence that it is planning for that now?

The picture is undoubtedly mixed but there is almost universal agreement that more needs to be done. 'At the moment we don't have the models of care and support that allow people to stay in their own homes for longer,' says Alzheimer's Society head of policy and campaigns Andrew Chidgey.

NHS Confederation deputy director of policy Jo Webber says there is evidence that the NHS is beginning to think about the increasing numbers of people with dementia.

She says joint commissioning between health and social care will be very important. 'A lot of the issues are about getting the right care in at the right time,' she says. 'And it has to be a package that works for the carers as well as the patients.'

The NHS will be responsible for only a small part of that care - but it will have a great financial incentive to ensure it works. Unplanned admissions of dementia patients who can no longer cope at home - or whose carers can no longer cope - will be prohibitively expensive. This may drive the NHS to work more closely with voluntary bodies, which could have a major part to play with dementia patients who do not need full hospital services.

'One of the most cost effective things we can do is provide support for carers to carry on caring,' says Mr Hurst. At the moment, many carers reach crisis point and the person they care for may end up in a nursing home or an acute hospital bed.

Maintaining someone at home is not just about a mental health outreach team, although that may be important. It may be about proper communication with carers, respite care, telemedicine, home modifications - or moving dementia patients to homes designed for them.

Many organisations argue that the government needs to look at state expenditure as a whole, rather than simply NHS spending or social care spending. The Alzheimer's Society argues that the costs of drug therapy for patients in the early stages of dementia is more than outweighed by the reduction in social care they need. But this has not been adequately worked into cost-benefit analysis. Plus much care is provided at no apparent cost by carers.

Unbundling tariffs for long-term conditions could help the NHS and local authorities - and the voluntary sector - work together on care packages. Local area agreements could be one way of doing this, Ms Webber says.

The next step for many people with dementia is likely to be a care or nursing home - an expensive option but cheaper than a hospital bed. Maintaining people will be affected by the quality of staff and regular contact with NHS services.

Mr Chidgey says there can be problems accessing primary care and dealing with other ailments, often because of communication difficulties. 'People are developing quite serious conditions that are not being picked up. We get cases of people developing cancer,' he says.

Same condition, longer stay

When people with dementia are admitted to hospital for other reasons, they stay for twice as long as those with comparable conditions but without dementia. That can be because staff are not sufficiently aware of their needs - for example, around eating and drinking - or sometimes because they cannot return home or to a care home. Mr Ellis says discharge arrangements are one area that the NHS could look at. Tailored intermediate care or intensive support at home may speed discharge. The voluntary sector might be of enormous help here.

Philip Hurst would like to see more emphasis on the needs of people with dementia built into training programmes.

'People are not being equipped to identify and respond to people with dementia in their education,' he says. 'For us, that is one of the reasons why people with dementia often get very poor care outside a designated service.

'People with dementia who end up in an acute hospital often get a poor standard of care because people are not able to identify dementia.'

The needs of patients with dementia cannot be left to mental health teams, he says - healthcare staff across the spectrum need to be able to deal with their particular needs. For example, dementia patients may need hip replacements as much as others of their age - but there will be special aspects to their care which orthopaedic surgeons need to bear in mind. 'That's one of the biggest challenges for the NHS in terms of the mindset around where responsibility for people with dementia lies,' he says.

Training deficit

Many NHS and social care staff who provide daily care for dementia patients have received little or no training around this. The Alzheimer's Society says 75 per cent of people in care homes have dementia but only 10 per cent of staff have had specialist training. This may mean they are more likely to use sedatives and neuroleptic drugs where better-trained staff, with greater insight into why the patient is being aggressive or abusive, may be able to use other strategies.

Royal College of Nursing adviser for older people Pauline Ford says that nursing training may need to be looked at: some students get only six hours over three years on older people's needs.

Lack of training may be one reason why some sectors have a rapid staff turnover. Mr Ellis says training could be done now and would have immediate benefits for staff and patients.

As the number of dementia patients increases, both the NHS and social care sectors will need to attract more care staff. Better pay for healthcare assistants may need to be a part of that, suggests Pauline Ford. Expert dementia teams that can advise other staff on the care of dementia patients also need to be increased. Ms Ford says there are already increasing numbers of patients with dementia on acute hospital wards, where staff can struggle to provide them with appropriate care or to get input from dementia teams. This is only likely to get worse, she believes.

The NHS may also have to deal with different attitudes and expectations. The post-war generation has grown up in a society that has increasingly become consumerist and rights oriented and which has a strong concept of the individual. 'There's a very different attitude towards services,' says Mr Ellis. 'This is a generation that is more used to getting what it is entitled to. They are just discovering how little society provides for older people.'

As their parents - and later they themselves - become more prone to dementia, they may demand a better, more patient-focused service.

For example, they may not accept that people with dementia should be denied other aspects of healthcare. Mr Hurst knows of instances where people with dementia are excluded from intermediate care schemes, even though they would benefit from them. A more vocal 'dementia lobby' may make that unacceptable.

Tough crowd

Planning services for a generation used to their voices being heard may be different from planning for those who saw mental health problems as a stigma and healthcare as something to be grateful for. Dementia patients, especially those in the early stages, may demand more say in their own care.

The use of dementia advocates has become more common and this may spread. Issues such as end-of-life care for dementia patients which are rarely aired today may be more prominent. Allowing people in the early stages of dementia to plan their later care through expressing preferences and even advance statements will also become more important.

The NHS will also have to think about its own staff, an increasing number of whom will have caring responsibilities for people with dementia. Carers' leave and 'elder care' may become more pressing human resources issues in the way parental leave and childcare did in the past 10 years. 'What sort of flexibility will the NHS as a massive employer be able to offer its own workforce?' says Mr Ellis.

Providing social care for elderly people - both with and without dementia - may also sharpen competition in the labour market for people with skills in these areas, but not necessarily high-level professional qualifications. This may make it harder for the NHS to attract staff such as healthcare assistants (wage increases in the social care sector have been running ahead of inflation for the last four years) and may mean a migrant workforce will play an important part.

Barring a pharmaceutical breakthrough, rising numbers of dementia patients will be a defining feature of the NHS and the social care system. And that will be expensive.

'It is about how additional investment is spent rather than whether it is spent,' says Mr Hurst.

There is uncertainty about who will meet so many of the bills involved in dementia care, and how the system will work when a small amount spent on social care could reduce the NHS bill.

Jonathan Ellis of Help the Aged says a national debate is needed on how care should be funded, how much the state should fund and what the individual should fund for themselves.

He says: 'Just as we had a political consensus about the establishment of the health service, then maybe what we need is a political consensus about the future of long-term care to give us certainty.'