Dementia Care Services

Jim Shannon Excerpts

Wednesday 9th September 2015 Westminster Hall

[Edward Argar (Charnwood) (Con)]

I beg to move,

That this House has considered dementia care services.

It is a pleasure to lead this debate—the first in my name since my election—under your chairmanship, Mr Davies. It is also a pleasure to debate with a Minister whose commitment to this cause is well known, on a subject of such importance. Indeed, its importance grows daily.

I am particularly pleased to see my hon. Friend the Member for Wealden (Nusrat Ghani) next to me. I hope that she plans to speak in this debate, because her work in her constituency on this subject, and the depth of her knowledge, is well known and will be of great benefit to the House.

Dementia is incredibly cruel; it can take a person away from you even while they are still with you. It is estimated that there are around 850,000 people with dementia in the UK; that 21 million people have a family member or close friend with dementia; and that a third of people over 65 will develop it. The majority of those 850,000 people are over 65, but an estimated 17,000 people below that age have dementia. In my constituency of Charnwood, it is estimated that just over 1,000 people have dementia. All of this—put aside the human consequences for a moment—is estimated to cost around £23 billion per annum, with a huge proportion of that being met by families, either through care that they engage or through the free hours of care that the 670,000 voluntary carers provide. The challenge before us is huge.

Significant progress on dementia has been made in this country in recent years. However, while we as a society have made significant strides in improving our longevity and our ability to fix and patch up our physical selves through the medical profession, our understanding of and care for the mind have fallen behind somewhat. Dementia poses a massive financial challenge to our country, as people live longer—a good thing, but a partial consequence is an increase in the number of dementia cases.

The last Labour Government should be rightly proud of their work in bringing forward the first national dementia strategy, and I pay tribute to them, through the shadow Minister, for that far-sighted step. It is a baton that the current Government, and particularly this Prime Minister, have seized with vigour; there has been the Prime Minister’s challenge on dementia 2012, the G8 dementia summit, and the Prime Minister’s 2020 challenge. All this is hugely positive, and dementia is an issue on which there is considerable consensus in all parts of the House, and among all the parties represented within it. However, we must not think for one moment that we have done enough, nor lose the momentum built up thus far.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this matter to the House for consideration. A great many of us across my constituency of Strangford and the whole of the United Kingdom of Great Britain and Northern Ireland know people who suffer from dementia. Just last week, I had the opportunity to go to what is referred to as a memory café, which is organised by the Alzheimer’s Association, which is a wonderful organisation. I met some wonderful people, as well as their carers and families. Does he recognise the good work that the Alzheimer’s Association does? Does he feel that now is the time to not only raise awareness of Alzheimer’s but commend the Alzheimer’s Association for its work?

[Edward Argar]

In addition to the hon. Gentleman’s many talents, which are well known in this House, he appears to be a mind-reader, as I was about to come on to that subject, having visited a similar memory café on Monday. He is absolutely right to highlight and pay tribute to the work of such places. On Monday, I went to the Syston community centre, where our local Alzheimer’s Society group was holding its regular Poppies memory café session for about 30 carers and people with dementia. As I am sure the hon. Gentleman did on his visit to his local memory café, I met some amazing people and it was a fantastic session. My memories of that session, and the lessons I learned from it, remain with me; I continue to reflect on them. However, across the UK, including in my region—the east Midlands and Leicestershire—the access to and coverage of such vital services remains patchy; that was a message I got loud and clear from the people I spoke to. As I suggested, that session left me in no doubt about the vital role of dedicated and passionate carers, including the amazing people whom the hon. Gentleman and I met, in helping people with dementia.

[Edward Argar]

Yet again, it appears that another hon. Member has the facility of reading minds and anticipating speeches, because I was about to say that there remains too little understanding of dementia in our communities, despite the progress made, and dementia-friendly communities and workplaces can play a hugely important role in supporting both those who have dementia and those who care for them.

I encourage the Minister to push all Government Departments to become dementia-friendly workplaces, and to keep talking about dementia and raising awareness of it. I also encourage her to keep the NHS talking about it. I know that other hon. Members—not least the shadow Minister, the hon. Member for Oldham East and Saddleworth, who is chair of the all-party group on dementia and possibly the only dementia champion in this House—will continue to raise these issues, as the shadow Minister has done over many years.

A recent survey showed that 25% of 18 to 25-year-olds are keen to learn and understand more about dementia, as opposed to only 15% of those aged 55-plus; that was a 2012 YouGov survey, so it is relatively recent. While it is encouraging that young people are keen to understand and learn more about dementia, those figures are still far too low.

[Jim Shannon]

One thing that I became aware of after visiting the memory café last week and speaking to some of the people there—by the way, the Big Lottery Fund was one of the funders of that café, so it is doing good work—is that the age of those being diagnosed with dementia and Alzheimer’s is starting to fall. There are some people in the 40-to-50 bracket who have dementia, which worries me. Does the hon. Gentleman feel that there is anything we can do to raise awareness of that issue?

[Edward Argar]

The hon. Gentleman makes a valid point. Just last Saturday, I was at a gala in Anstey, which is a village in my constituency, and a man came up to talk to me about this issue. He said that a lot of emphasis is put on those in their 60s or 70s who develop dementia, but he told me about a lady who had developed it very early in life, which creates a whole new set of challenges around children, paying mortgages and the support that should be in place but is not always there. I will come on to the support that is or is not in place shortly.

The second part of the picture is about diagnosis and care. Diagnosis rates have improved. In 2011-12, only 45% of people with dementia received a formal diagnosis, but Department of Health figures suggest that the figure is now up to 59%, which is real progress. I know that 66% was the target set for the end of this year, but can I encourage the Minister to go that little bit further and press for a 75% target for diagnoses by 2017? That is ambitious but achievable, and if we do not set ambitious targets we will not achieve them.

However, diagnosis is only the start. Too many people tell of being diagnosed and then receiving no information or support, or only very limited information or support. In a recent Age UK survey, 89% of those surveyed said that they did not feel they had enough information about dementia. We need to improve GPs’ understanding of dementia care; many GPs are fantastic, but that is not universal. We need to ensure that after a diagnosis, people and their families receive information on “What now?”, as well as support. What steps do the Government propose to take to create minimum mandatory standards to ensure that everyone with a diagnosis receives swift signposting and advice from dementia advisers and a proper support package for them and their carers, possibly through the NHS outcomes framework?

We all know—all the research shows this—that once someone is diagnosed with dementia, if they are to continue to lead a full life, it is best for them to be able to live independently at home with their family, but if they are to do that, we must ensure that carers are cared for and supported, and that support plans are in place—as much for the carers as for any individuals with dementia. A recent pilot in Norfolk on the use of Admiral nurses—they are the dementia equivalent of Macmillan nurses, and although they are sadly rather less well known, they do a fantastic job—saved more than £400,000 and provided a strong local support service for carers and people with dementia. What consideration have the Minister and the Department given to how that might be made more widely available? What support can be given to local authorities in that respect?

We are all aware of the funding pressures faced by local authorities—not least my own, Leicestershire. It gets one of the lowest per-head funding settlements in the country, and I hope that that can be reviewed and revisited in this Parliament, with rural councils being given a fairer share. While I would not presume to burden the Minister with responsibility for dealing with the local government finance settlement as well, what progress has been made nationally on developing integrated dementia care pathways, which can go some way to alleviating financial pressures?

While care and support to stay independent at home are key, there are times when people with dementia have cause to be admitted to hospital, and here the picture is by no means universally good. According to a recent survey, 41% of hospitals do not include dementia awareness training in staff inductions, and only 36% have a care pathway in place. Many people with dementia still have real problems when they are admitted to acute care. More research into the quality of personalised care for those with dementia, particularly in hospitals, would be immensely valuable. It is estimated that a quarter of hospital beds are occupied by people with dementia, although they might not necessarily have been admitted for dementia. On average, such people have a 20% longer hospital stay than others.

While some hospitals have made progress in having dementia-friendly wards, it simply is not enough. We should have hospitals that are dementia-friendly in their entirety. We often hear of instances of people with dementia not having that noted on their hospital records, meaning that no allowance has been made for it. We also hear of carers and partners not being allowed to stay with relatives with dementia in hospital, which often leads to acute anxiety and distress among those patients at being in an unfamiliar environment without any familiar faces around them. I hope that Simon Stevens and the NHS can look at that.

The national dementia strategy and the Prime Minister’s challenges on dementia for 2015 and 2020 set out an array of targets and objectives. The key to success, however, will be proper implementation to deliver clear and focused outcomes that are measured, monitored and reported. Will the Minister update the House on the implementation plan to achieve the objectives that we all welcome, and to ensure that dementia care gets its share of the very welcome additional funding that the Government have pledged to the NHS as a whole? Specifically, as we look at how to improve care and support, 37 NHS vanguard sites are piloting new care models, but only three make specific mention of dementia. Will she consider adding to that number? The National Institute for Health and Care Excellence is updating the 2006 clinical guidelines on dementia. That work is due to be completed in September 2017. Will she make representations to NICE on updating the dementia quality standard as part of that? It is an important tool in driving up NHS standards in this area.

The third and final part of tackling dementia is research. We have seen some encouraging early signs over the summer that finding a way of slowing down the progress of dementia might be that little bit closer. There is still a long road ahead for that research, but it is a reminder of the importance of a continued focus.

--- Later in debate ---

[Tom Tugendhat (Tonbridge and Malling) (Con)]

I declare an interest as a proud supporter of the Dementia Friends movement, which has done so much in my constituency. I praise in particular Mrs Christine Parker, whose work in bringing the Dementia Friends message to so many in Tonbridge has echoed across other areas. I draw inspiration from her for my remarks, which I hope I can make on her behalf as well.

The rising demand on the NHS in my community is not unlike that in others. One in three people in my constituency is over 65, so the pressure on dementia services is naturally high. Indeed, 1,600 people in my community have dementia, and in the west Kent NHS region, 322 are under 65 and therefore count as young dementia sufferers. As my hon. Friend the Member for Charnwood (Edward Argar) so eloquently put it, when we think about dementia and old people, we usually think about people for whom it is an end-of-life event, but for too many in our society it is not—it is part of life. It is something with which individuals, families and communities—indeed, our whole society—will have to live as they experience this terrible disease.

It is important that we work together, because this is not something that central Government can solve alone; nor, indeed, can the devolved Administrations or local government. It requires a fully joined up approach. The work by a lot of third-sector organisations to bring together the community at all levels has been essential. I particularly praise the organisations working in my part of Kent: Age UK, Crossroads, the Alzheimer’s Society and many care homes.

[Jim Shannon]

In his speech, the hon. Member for Charnwood (Edward Argar) mentioned the need for more research and development. There have been massive steps forward in the development of medication that can delay the onset of Alzheimer’s and dementia in some cases. Although that is a wonderful step forward, the cure is not yet here. Does the hon. Gentleman feel that, along with all the good work that the Government are doing, there should be more partnerships with the pharmaceutical industry to ensure that we can take more giant steps forward?

[Tom Tugendhat]

I can confirm that the hon. Gentleman is not reading my mind—I had not thought of those points. He makes a very important point about tying together with the pharmaceutical industry. I would also urge tying together with universities throughout the country, because many of them across the nation have done incredible work on this issue. I urge my hon. Friend the Minister to look hard at what more can be done to partner up.

Many of the issues have already been covered today so eloquently by Members, so I will just highlight one area that I feel is somewhat tragically overlooked. As we increasingly see younger people suffering from this terrible disease, we must recognise that their needs are different. We are talking about not only old people who may also suffer from other weaknesses and might not be going out as much as they once were, but younger people who rightly expect to enjoy some form of independence in their life. Indeed, through medical treatment, older people are, thank God, much stronger and fitter than they once were and rightly continue to enjoy active lives for longer and longer.

As a society, we should do more to encourage dementia-friendly transport. In my constituency, we have been working towards dementia-friendly communities, whether towns or villages, and we have had some success in different areas. In fact, some places have developed a dementia-friendly high street and various other spaces. Nevertheless, I feel we have not yet got dementia-friendly transport right. Whether we are talking about taxis, buses or trains, the ability to be able to put someone with dementia on a form of transport and know that the people on board will be aware that there might be an issue, allowing people with dementia to maintain some level of independence, is essential if we are ever to achieve the result we wish for: people with dementia living happily and comfortably as part of our society.

Finally, when I learned about dementia, what struck me most was the importance of emotion, which we too often forget when we medicalise and use too much science. When we deal with people in our communities who have dementia, it is important to remember that even if they struggle to understand who we are, the community they are in or the actions they are taking, the one thing that will stay will them, which we must really value, is the emotional response. We must remember that that will live with them for a lot longer than any confusion, and we must make sure that we play our part as individuals—not just as a society—in ensuring that that emotion is positive.