Dementia and Alzheimer’s Disease

Baroness Keeley Excerpts

Tuesday 12th April 2016 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is a pleasure to speak in this debate with you in the Chair, Mr Stringer. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. I recognise the remarkable amount of work that he does on social care and carers, and I thank him for that. We have had some excellent contributions from 14 hon. Members—almost too many to mention, so I will not mention them all. We are making some progress but we have a long way to go to improve care for people with dementia and support for their carers.

The Labour Government launched the first ever national dementia strategy, appointed the first national clinical director for dementia, and commissioned the National Institute for Health and Care Excellence to develop the quality standard for dementia. Together, those began the process of establishing memory clinics, providing better training for GPs and improving the quality of dementia care for people in hospital. I thank the hon. Member for Charnwood (Edward Argar) for mentioning that record. It is welcome that the Government are carrying on that work through the Prime Minister’s important challenge on dementia 2020. I am sure that hon. Members here today agree with the aims of that challenge but we have to accept that there is a long way to go before they become a reality.

Dementia is a distressing condition. In the long term we should be aiming for a cure, but while working to find a cure we must put equal emphasis on the care provided to people with dementia and the support provided to their families and carers. Carers UK reminds us that the symptoms of dementia can make providing care particularly difficult. People with dementia—we have heard about this in the debate—can grow agitated and violent, and night-time wandering and shouting can disrupt carers’ sleep.

Families report challenges in finding services that have the expertise to provide the right care and support. Of course, that means that it is more difficult for carers to get practical help or to take essential respite breaks as they do not have, or they lose confidence in, the quality and appropriateness of the care available. I welcome the strong case made by my hon. Friend the Member for Burnley (Julie Cooper) for better support for carers.

The care sector has a turnover rate of 25% so even when a care package at home is arranged, high staff turnover makes it harder to build familiarity and trust. For people with dementia, receiving care each day from someone they see as a stranger can be upsetting and confusing, and can make them more likely to refuse support, putting further pressure on their family carers. It is clear that improvement is needed, so can the Minister say whether the carers of people with dementia will be a key strand of the upcoming carers strategy?

I applaud the Alzheimer’s Society “Fix Dementia Care” campaign, which wants to ensure that people with dementia receive the highest standards of care in hospital, in care homes and in the home. It is of great concern that a survey of carers of people with dementia found that only 2% believed that hospital staff understood the specific needs of people with dementia, more than half felt that the person they cared for was not treated with understanding and dignity in hospital, and nine out of 10 felt that the person with dementia became more confused while in hospital.

The Alzheimer’s Society is calling for all hospitals to publish an annual statement of dementia care. In my area, it was pleasing that Salford Royal recorded information for patients with dementia and that the records showed that Salford Royal’s performance on a number of elements of care was better than national averages. However, other local hospitals did not record that information so there is much to do to bring that up to standard.

As part of improving hospital care for dementia patients, listening to carers would be a step forward. Nicci Gerrard is leading John’s Campaign for the right for family carers to stay with people with dementia in hospital, as we heard earlier. Nicci’s father John suffered a significant decline when he was in hospital for five weeks. Although the family felt that individual nurses and doctors were kind, conscientious and respectful, restrictions on waiting times meant that the family could not sit and talk to John, read to him, make sure he ate or keep him attached to the world.

John’s Campaign calls for the families and carers of people with dementia to have the same rights as the parents of sick children. They should be allowed to remain with them in hospital for as many hours as they are needed or are able to give. I understand that 272 hospitals across the UK have pledged their support to John’s Campaign. Will the Minister outline what is being done to improve hospital care for dementia patients and whether she supports John’s Campaign?

As well as improving hospital care, there are real concerns about the state of social care. The Association of Directors of Adult Social Services reports that £4.6 billion has been cut from adult social care budgets and that 300,000 fewer people are receiving publicly funded services than in 2009-10. Social care has been an easy target for cuts. I am concerned now that the Chancellor’s aim to find a further £3.5 billion in savings by 2019-20 will hit council and social care budgets even further.

The Government have stated that, by 2020, they want to see an increase in the number of people with dementia being able to live at home with more personalised support available to them and their families. That is a laudable aim, but the Channel 4 “Dispatches” programme last week showed just how poor home care can be, with time clipped from care visits, careworkers working very long days and not being paid for travel time, care needs neglected, and no time for the careworker to talk and listen to the person receiving care.

This year and next year are tough years for social care funding because home care and residential care providers bringing in the so-called national living wage have estimated they will face costs of £330 million in 2016-17 with no additional funding for this Government policy. The better care fund only provides £100 million extra next year, so this year is a problem. It is not surprising that careworkers say that issues with their pay and conditions prevent them from delivering good quality care. Unison found that three quarters of domiciliary careworkers do not have enough time to provide dignified care and that 84% of service users not getting enough time for care are people with dementia.

Caring for someone with dementia is not just about aspects of physical care. It is about conversations—knowing the person and knowing what is a comfort to them. Across hospitals, primary care and home care, we need to improve staff training and understanding of how to support people living with dementia and how to support and work with their family carers.

Carers UK reminds us that carers are the experts in the care needs of the person they care for, so it is heartening that today, Dr Julie Wray of the School of Nursing, Midwifery, Social Work and Social Sciences at the University of Salford is launching her book, “Supporting families and carers: a nursing perspective”. I hope that her nurse colleagues use the book to develop their knowledge of how to work with carers of people with dementia. They are the people who make such a vital contribution to the care of all those people.

[Graham Stringer (in the Chair)]

I call the Minister. Would you leave a couple of minutes for Jim Shannon to sum up?