Dementia Care and Services

Alec Shelbrooke Excerpts

Tuesday 7th January 2014 Commons Chamber

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

Dementia services need to be addressed now. According to the Office for National Statistics, by 2030 the number of people entitled to draw a pension will be 15.6 million, of whom more than 3 million will be over 85. Society has done much to prolong lives through a focus on helping ageing bodies and faulty organs, but for too long help for the brain has not kept pace with that for the rest of the body.

With an ageing population, it is no surprise to hear the worrying prediction that 1 million people will be living with dementia by 2021, up from 800,000 today. There is obviously a massive financial worry resulting from the figures, especially when dementia is already predicted to cost the UK economy £23 billion a year, which is more than cancer, heart disease or stroke. It is therefore crucial to have plans in place that are proven to deal effectively and compassionately with dementia and that can be improved and expanded as necessary over the next 10 years.

Aside from the economic argument, the more pressing issue for me is that of compassion, care and support. When my grandmother was diagnosed with dementia 25 years ago, little support or information was available for carers. Being painfully aware that the last two years of her life were spent with little memory or recognition of family members, I now wish that she could have received an earlier diagnosis, so that we could have found professional help much earlier.

To put the problem that we face in context, I will give some statistics from the Alzheimer’s Society, which has been hugely supportive during my preparation for this debate and has worked to raise awareness of these issues in Parliament and throughout the country. One in three people over 65 will die with dementia. Two thirds of care home residents have some form of dementia. There are 600,000 family carers of people with dementia. It is estimated that a quarter of hospital beds are occupied by people with dementia. The most poignant statistic for me when I was preparing for this debate was that dementia is now the most feared health condition among people aged over 55.

[Steve Rotheram (Liverpool, Walton) (Lab)]

I congratulate the hon. Gentleman on securing this debate on such an important issue. As we know from previous debates, this issue is close to the hearts of many people in this Chamber who have first-hand experience of dementia. Given what he has said about people living longer, which is to be welcomed by everyone, does he agree that one of the most important things that we can do is to ensure that there is better co-ordination in the research into the prevention of dementia? The issue of treatment is secondary. Preventing people from getting dementia is surely the most important thing that we can do.

[Alec Shelbrooke]

I am grateful for the comments that the hon. Gentleman has made. He is right that we must not only treat the illness, but consider what preventive work can be done. I will speak later about the need for the national strategy to focus not only on the treatment of people with dementia, but on what other research can be done.

It is obvious that dementia is on the radar of an ageing society. However, given the emotional toll of dementia and its prevalence at the end of life, I was horrified to hear that only 48% of people who live with dementia receive a formal diagnosis, meaning that many people are denied the care and support that they and their loved ones need. Before the national dementia strategy for England was introduced in 2009, the rate was 33%. If further proof were needed that dementia care and services need to be improved as soon as possible, those awful diagnosis rates should be enough to show that something needs to change.

I am proud to be part of a coalition Government who have shone a long-overdue light on dementia, not least through the Prime Minister’s decision to host the G8 summit on dementia last month. However, there is still much to do before we can be confident that everyone who is living with dementia—individuals and families—is able to have a fulfilled life.

[Neil Parish (Tiverton and Honiton) (Con)]

It is good that my hon. Friend has secured this debate. It is not only the people who are suffering from dementia who are badly affected, but those who are looking after them. We must therefore not only get the diagnosis right for those who are suffering from dementia, but ensure that there is respite care for those who are looking after them. They need a break in order to fulfil their caring role properly.

[Alec Shelbrooke]

I am most grateful to my hon. Friend for those comments. I am sure that everybody has experiences of their own, but perhaps it will help the House if I speak about my grandmother, as I did earlier. I was aged about 12 or 13 at the time of her diagnosis, and my sister was two years younger. My dad was working as a teacher and supporting me, my mum and our family, but he was also dealing with his own mother. I remember the toll that that took on him. He had to work out what was the best thing to do for his mother. He toiled over the decisions that he had to make for a long time, such as selling the family home in which he had been born and brought up in order to raise money for the care home. My hon. Friend is right that there is a massive toll on the families involved, as well as on the people who have this terrible disease.

Despite the focus on dementia, there is a danger that the momentum that has been created by the Prime Minister’s challenge on dementia, the G8 summit and the work of the Science and Technology Committee and the all-party parliamentary group on dementia will be lost if the Government do not act in a number of areas.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter to the House for consideration. Every one of us will have knowledge of this matter personally and from our position as elected representatives. One of the homes in my area has 23 residents and 20 of them have dementia. The magnitude of the problem is tremendous. Does he agree that an exchange of medical information would be helpful? Northern Ireland has the highest diagnosis level in the United Kingdom. Perhaps it is time to exchange the knowledge in Northern Ireland, Scotland, Wales and England to come up with a strategy for the whole of the United Kingdom of Great Britain and Northern Ireland.

[Alec Shelbrooke]

I am most grateful to the hon. Gentleman. I am sure the Minister heard his comments and will perhaps reflect on them when he sums up the debate.

I was talking about a number of areas. First, to continue making improvements along the current trajectory, it is crucial that the national dementia strategy for England is updated from the 2009 version. That strategy identified 17 key objectives for the NHS and social services aimed at improving the commissioning of dementia services, the quality of care delivered in hospitals and care homes, developing a clear picture of research and evidence needs, and providing support for carers. Will the Minister please outline what meetings have taken place about the effectiveness of the NDSE, and say what plans he has for a formal evaluation of it?

Secondly, in spite of the obvious benefits of the national strategy, so far the Government have made no plans to renew it. I welcome the Prime Minister’s challenge on dementia, which is ambitious in its plans and places a welcome political spotlight on the issue. However, that challenge alone does not provide the breadth of detail needed to guide health and social care services to make improvements, and neither does it carry enough accountability measures, which a national strategy would do.

A new national dementia strategy, with guidance for commissioners of health and social care, GPs, hospital trusts, care homes, and others, must be published before the current strategy expires in April this year. It does not seem to be a new trend of coalition Government not to renew national strategies, because in 2011, new national strategies for cancer and chronic obstructive pulmonary disease were published, and one for hearing loss is due.

[Hazel Blears (Salford and Eccles) (Lab)]

I have been listening carefully to the hon. Gentleman who is making an eloquent and powerful case. His point about the strategy is fundamental. We have a system of different clinical commissioning groups, and a lot of fragmentation, and we need a holistic strategy that brings together the national effort. All credit to the Government for pursuing the issue, but I echo what the hon. Gentleman is saying about the need to renew the national strategy to maintain that momentum and energy, and ensure we get good services across the country. Will he join us all in continuing to press the Minister for renewal of the strategy?

[Alec Shelbrooke]

I am most grateful to the right hon. Lady, and I congratulate her on the work she does with the all-party group on dementia. She and all hon. Members will recognise that on this subject the whole House is fairly united in trying to get the Government to make those changes, regardless of whether we sit on the Government or Opposition Benches.

Our international partners, many of which attended the G8 summit in December, have ambitious long-term plans. In the US, for example, President Obama published a dementia strategy that runs until 2025, well beyond his own term as President. France has recently published its fourth dementia strategy. The economic case for having a clear directive for dementia is overwhelming. Dementia costs the UK £23 billion a year, which is more than cancer, stroke or heart disease, yet the annual research spend into dementia is about £51 million, rising to £66 million in 2015. That compares with £521 million spent on cancer.

The ambition announced at the recent G8 summit to double the spend on research in the UK by 2025 is an excellent step forward, but a new national dementia strategy that covers all aspects of dementia, including research into prevention and finding a cure, will ensure that the momentum gained from the good work undertaken by the coalition Government will be turned into improvements for people affected by dementia. To be clear, I am not suggesting that money be taken from the other crucial health causes I have mentioned; I wish merely to illustrate the numbers involved.

What plans does the Minister have to renew the current national strategy on dementia? That point was left unanswered in the Backbench Business Committee debate last year. As past statistics have shown, the introduction of a national strategy for dementia in England has caused a rise in the rate of diagnosis, although the level is still worryingly low at 48%. More needs to be done on prevention, particularly further investigation into whether the small change of introducing homocysteine level tests on the NHS could act as an early-warning sign in identifying the problem.

[Mr David Ward (Bradford East) (LD)]

Bearing in mind what the hon. Gentleman has said about low diagnosis rates, does he agree that the national strategy should include promoting greater awareness for many of those close to dementia sufferers who do not identify with the condition? They think people are just losing their hearing or becoming visually impaired as they grow older, and the diagnosis is then made far too late because symptoms are not realised early enough.

[Alec Shelbrooke]

That is a very helpful intervention from my hon. Friend. I will move on to cover some of the care homes in my constituency that are tackling those issues as one, but as he says it is important that a national strategy has accountability written into it so that these issues can be tracked as we move forward.

More than half of people with dementia cannot access the treatment, services and support they need because they have not officially been diagnosed. Furthermore, carers of people living with dementia also suffer. They have the uncertainty of knowing that something is wrong with their loved one, but have no official diagnosis. Patients and carers are therefore denied expert support through health and social care services and often feel that they cannot approach organisations such as the Alzheimer’s Society without a proper diagnosis.

In my constituency, the two clinical commissioning groups that are spread across Elmet and Rothwell have wide-ranging and impressive plans to increase diagnosis rates, but their ambition can go even further. Currently, NHS Leeds North diagnoses 50.85% of people with dementia, while NHS Leeds West CCG is only slightly better with 54.35%. My constituency reflects the picture across the rest of the country, meaning that half the people living with dementia are denied the certainty of a diagnosis.

[Heather Wheeler (South Derbyshire) (Con)]

I congratulate my hon. Friend on securing this debate. Will he congratulate the staff of Lloyds bank in Swadlincote high street who have taken the Alzheimer’s Society as their charity of the year? The local Alzheimer’s carers group works there and raises hundreds of pounds every month for that very important cause.

[Alec Shelbrooke]

My hon. Friend eloquently describes the work going on in her constituency to raise funds for this very important issue. I wish to add my congratulations to my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) on her dedicated work and on securing the debate last month, as well as to the right hon. Member for Salford and Eccles (Hazel Blears) and my right hon. Friend the Member for Sutton and Cheam (Paul Burstow). I hope that the recent momentum achieved by the efforts of the all-party parliamentary group to shed light on this issue will result in achieving the aim—backed by NHS England—of 66% of people with dementia receiving a formal diagnosis by 2015. It can be done, as some CCGs already have a 70% diagnosis rate. Can the Minister shed any light on why individual CCG diagnosis rates are so varied and do not add up to the NHS England ambition of 66%? Are there any plans to investigate further the effectiveness of homocysteine tests on the NHS?

[Bob Stewart (Beckenham) (Con)]

Is this not a very human problem? Diagnosis rates will depend entirely on whether people go to see their doctor, who, using a simple test, identifies whether someone has dementia. It is a bit unfair to say one CCG has a better rate than another because the determinant of the rate of identification is whether people go to see their doctor or are taken to see them by family and carers.

[Alec Shelbrooke]

I seem to be one page behind the House in my speech this evening, because interventions keep pre-empting the next part of my speech. My hon. Friend is correct that we need wider support. I have become a dementia friend, as I know many other hon. Members have.

The aforementioned points all combine in reality to have an impact on post-diagnostic support, as well as the support for those who have not been diagnosed but need care. In my constituency, some inspiring examples make me feel optimistic that dementia can be dealt with effectively and compassionately. I have seen at first hand that such support, delivered well and early in a person’s dementia journey can lead to better outcomes.

[Jim Shannon]

There have been great advances in medication. If people get an early diagnosis, medication can give them an extra five to six years of quality life. Does the hon. Gentleman agree that it is important that medication is available across the whole United Kingdom to give people with dementia or Alzheimer’s a better quality of life?

[Alec Shelbrooke]

I thank the hon. Gentleman for that intervention. He makes important points that reflect what the hon. Member for Liverpool, Walton (Steve Rotheram) said earlier: it is not just about treating the disease when it is there, but about how much preventive work can be done in the first place.

As I said at the start of my speech, I wish only that some of the strategies, diagnoses and drugs that are now available were there for my grandmother 25 years ago. I was only about 11 to 13 years old in the two years before she finally went into a home, but I realise in hindsight how her quality of life was slipping away. I talked about the toll that that took on my father when he was trying to do what was best for his mother. He would be at work all day. His mother lived in south-east London while we lived 20 miles away in Kent and he would get a phone call at 3 am from her next-door neighbour saying, “Your mother”—she was in her late 70s—“is out walking the street in her nightgown.” Those are the pressures and there was nothing in place at that time. She was still living on her own and, as her grandchildren, we would still visit her. Today, I believe that she would have had a better quality of life.

I am encouraged by some of the things that are going on. I want to draw attention to a chap called Paul Mancey and his team at Orchard Care Homes. They are located in my constituency and are developing care partnerships between charities and care providers, which is very much what my hon. Friend the Member for Bradford East (Mr Ward) was talking about. This new approach means that residents are tested for hearing loss, diabetes and dementia symptoms on entry to the care home, ensuring that appropriate care packages are put in place.

Many other care homes are developing innovative ideas, too. I am pleased to say that care homes have developed immensely since we moved my grandmother into one in the early 1990s, and even more delighted that the leading company on the development of care villages is located in my constituency. Graeme Lee and his team at Springfield Healthcare have set the bar on building a quality and comfortable dementia-friendly care village at Seacroft Grange, which is located in the constituency of the hon. Member for Leeds East (Mr Mudie).

As is often the case, however, the truly inspirational support networks are not those provided by the professionals. My hon. Friend the Member for Beckenham (Bob Stewart) talked about early diagnosis, and there are community champions. One community champion in my constituency is Peter Smith, who established the Tea Cosy Memory Café in Rothwell, which provides a welcoming place for those with dementia and their carers, as well as making Rothwell the first dementia-friendly community in Leeds.

The Alzheimer’s Society has done great work to promote awareness of dementia. Hon. Members can play a greater role, too, in raising awareness. I alluded to the fact that, like many Members, I am proud to be a dementia friend and to support the work of the Alzheimer’s Society. I urge as many Members as possible to become a dementia friend and to help the Alzheimer’s Society.

[Hazel Blears]

I am delighted that the hon. Gentleman is a dementia friend. Will he join me in encouraging all Members to make their constituency offices dementia friendly? We have just embarked on this journey. We are looking at special signage and at constituency letters to ensure that they are written in a way that people can understand, and all my constituency staff have been trained to be dementia friendly. If every Member of Parliament’s constituency office was dementia friendly, that would be a significant step forward. Perhaps we could work together on that.

--- Later in debate ---

[Alec Shelbrooke]

I hugely welcome what the right hon. Lady has just said. Perhaps I could be cheeky and suggest that she e-mail every one of us in this House to outline what she has been doing in her constituency office, because sharing information and best practice is the best way we can help people on this journey. I look forward to working with her.

I urge as many people as possible to become dementia friendly and help the Alzheimer’s Society achieve its goal of creating a network of 1 million friends across the UK by 2015.

Those examples prove what many health professionals know: that peer support networks and dementia advisers are effective in providing information to people with dementia and their carers, and they are valued by service users. They should therefore be supported and I welcome the “Carers call to action” campaign by the Dementia Action Alliance to promote this particular facet of the issue—not to mention that they are a relatively cheap intervention that also raises awareness of dementia and tackles stigma.

What are the Government doing to improve post-diagnosis support and what plans does the Minister have to ensure that all people with dementia have access to a dementia adviser or to equivalent suitable named carers?