Dementia

Baroness Wheeler Excerpts

Thursday 28th June 2012 Lords Chamber

[Baroness Wheeler]

My Lords, this has been a comprehensive and authoritative debate on one of the major health and care challenges facing us today: namely, how we provide treatment, care and support for people suffering from dementia and ensure that their families, carers and the staff in hospitals, care homes and those who come to the patient’s own home can help them have the best quality of life and care. As one would expect, many of the key concerns and questions on improving research, diagnosis, understanding, services and support have been ably put by noble Lords during the debate. I will not repeat those. I look forward to the Minister’s response.

Of course, I also pay tribute to my noble friend Lord Touhig for securing this debate and for his excellent opening speech, setting out the context, the stark facts, the progress and developments since the national dementia strategy was launched by the Labour Government in 2009, and the challenges that we still face. Most importantly, I appreciated his reference to carers of people with dementia because they are so important in the debate—whether they have 24-hour caring responsibility in their homes, are family members supporting a dementia sufferer or are supporting their loved ones in residential care.

My noble friend Lady Pitkeathley also spoke passionately about carers, as you would expect. Ensuring that the everyday experience of carers is heard in debates such as this is vitally important, and the House is better informed for it. As a trustee of our local carer support group in Elmbridge, Surrey, I know that about 70 per cent of carers we support locally are caring for somebody with dementia. The dementia ranges from people experiencing the early disturbing signs of the onset of dementia, who, with their families, are wondering what the future will hold and how they will be able to cope, through to those in the severe advance stages, still cared for at home or in residential care, either with respite or permanent care.

Speaking to just a small number of these carers, two things are particularly striking—apart from the love and dedication that it takes to cope and carry on. First, the carer never stops feeling responsible, even when the husband or relative has had to go into hospital or residential care. Secondly, it is striking how much better we need to become at understanding the range of care and support that is needed, and at providing flexible community personal support and day and residential care that treats people with dementia with dignity and helps them maintain their quality of life.

I will quote from one carer whose husband with dementia is in residential care because she could no longer cope with him at home. She said:

“I had him home this weekend, which was nice but he was very distressed when I took him back this morning because he clearly didn’t want to be there. It makes me feel so guilty and sad, because when he is with me he is full of smiles and hugs, and I feel I am betraying him by taking him back. He has become unsettled generally because one of the residents in his wing has severe dementia and shouts and swears all day long. It is having a negative effect on my husband and the staff, but when I raise my concern with the home manager, he makes it clear that there is nothing he can do”.

Why this care manager feels unable to take action is a complex mix of failing to understand the spectrum of care that is needed and failing to respect the individual’s needs and the impact their behaviour has on other people with dementia, as well as on their carers and families. It is also often about poor assessment of the patient’s needs, lack of resources, inadequate training and the low pay of staff. As Carers UK has stressed, carers often report challenges in finding appropriate services with the necessary expertise to provide the right care, environment and support—a problem faced by my noble friend Lord Wills, as he explained.

This failure to find adequate care means that it will be more difficult for families to accept practical help or take a respite break, as they do not have confidence in the quality and appropriateness of the care. Also, as evidence to the Dignity in Care Commission set up by Age UK, the NHS Confederation and the Local Government Association has shown, poor or neglectful care, even for just a few days, can have a devastating effect. Locally, I was told of a care home that billed itself as having a “specialist” dementia ward. However, the reality of the care it provided—or did not provide in this case—meant that an elderly lady admitted for respite care to give her husband a break deteriorated so badly during her short stay that she was unable to return home because she could no longer get to the toilet on her own or feed herself. She is now in permanent residential care. The respite experience pushed the husband over the edge and he was no longer able to cope.

As I always stress, there is of course good-quality care and best practice in day care, assessment centres and residential homes across the country, and the huge challenge, as usual, is to raise standards in the homes where there is poor care to their level. I pay tribute to key improvement tools such as the Age UK’s initiative, My Home Life, which promotes quality in care homes for older people. It is an exemplar programme that helps staff to optimise the quality of care in their homes and has the active support of the Relatives and Residents Association and the national provider organisations representing care homes across the UK.

For dementia, the need for more research, early diagnosis and the importance of providing integrated health and social care for people to improve services are key elements, as noble Lords have stressed. The Alzheimer’s Society’s estimate is that two-thirds of people living with dementia live in their own homes, and a third live in care homes. The reality, however, as we on these Benches have repeatedly stressed, is that current inadequacies and failures of the system will not be addressed without tackling the crisis in the funding of social care. As all key stakeholders in the voluntary, public and independent provider sectors, as well as care professionals and service users, have stressed, a full package of reforms that address legal, current and long-term funding is needed.

How can local authorities that are currently having to cut £1 billion from social care budgets provide adequate or improved community care support, not just for people with dementia but for people with other lifelong conditions such as stroke damage or diabetes, and for their carers and families? I understand that new figures revealed by the Alzheimer’s Society and MHP Health Mandate also reveal an alarming 12% increase in the number of emergency hospital admissions for people with dementia since 2006. Is this not evidence that the community services that are needed to help people live at home are woefully inadequate to meet current or future demand?

I ask the Minister if he can update the House on when spring will finally arrive and the social care White Paper will be published. What will it cover? We know it will focus on the reform of social care law, which is very important, but does he not agree that making changes to the legal rights and entitlements of elderly and disabled people without dealing with the issue of how the services are to be funded now and in the future will only create more expectation and demand that cannot be met?

On the question of improving early diagnosis, can the Minister update the House on what progress has been made by local NHS organisations in developing plans to improve diagnostic rates, as set out in the Prime Minister’s dementia challenge? The challenge also made £54 million available through the dementia Commissioning for Quality and Innovation—CQUIN—programme to hospitals offering dementia risk assessments to all over-75s admitted to their care. Can the Minister update the House on how many hospitals have received payments under this scheme and how many hospitals have offered such risk assessments to all over-75s?

On the issue of keeping track of how the national dementia strategy is being implemented, I understand from the Mental Health Foundation that Andrew Lansley at last year’s Dementia Action Alliance event promised that there would be an annual report on progress. This would be a really important lever to help drive through improvements. Can the Minister advise us on when the first annual report will be published?

Finally, as regards the White Paper, can I press the Minister, when he updates us, to advise us on whether it will set out a clear timetable for addressing the recommendations of the Dilnot report, as well as a full government commitment to the cross-party talks on this, and to standing by the Prime Minister’s pledge to deal with social care funding in this Parliament? As he knows, the Minister has promised the House that the Government will not shy away from tackling this issue. I have pressed him on this matter on a number of occasions, and I must say that his responses have become increasingly expansive as we have gone on.

On 11 June, he assured me that the Government are,

“absolutely committed to introducing legislation at the earliest opportunity in this Parliament to establish a sustainable legal framework for adult social care”.—[Official Report, 11/6/12; col. 1137-8.]

That much we of course knew by then but, on 18 June, the Minister assured me that the Government’s,

“aim has been and remains to legislate in this Parliament to create a fairer, more just and better funding system for social care”.—[Official Report, 18/6/12; col. 1542.]

So today I am hoping that he will be able to go the extra mile and commit the Government to producing a timetable in the very near future for consultation on the Dilnot recommendations, and for implementation of long-term funding proposals in this Parliament.