Dementia and Alzheimer’s Disease

Graham Stringer Excerpts

Tuesday 12th April 2016 Westminster Hall

[Graham Stringer (in the Chair)]

Order. Before I call Jim Shannon to move the motion, I must explain that we are having technical difficulties. The debate is hugely over-subscribed—many people want to speak—so it is likely that after Jim Shannon has spoken I will impose a time limit. However, there is no connection between my clock and the clock on the wall, which is going to be a difficulty for speakers. When Jim Shannon has spoken, I will explain what we are going to do.

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[Several hon. Members rose—]

[Graham Stringer (in the Chair)]

Order. Given the technical difficulties, the number of people who wish to speak and the fact that I intend to call the Front-Bench spokespeople at around 10.30 am, if my arithmetic is right, we are due to go over that time. I will put on a time limit of four minutes and not add time for interventions, because that gets too technically complicated. I hope that is clear. That will probably take us just over 10.30 am. The Clerk tells me that, to aid right hon. and hon. Members, a bell will be rung one minute before the end of their speech time limit.

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[Neil Gray (Airdrie and Shotts) (SNP)]

I congratulate the hon. Member for Strangford (Jim Shannon) on securing this debate and pay tribute to him for his excellent speech, which will have touched many hon. Members here, as evidenced by the turnout today, and our constituents.

My father’s mother was diagnosed with Alzheimer’s years before I was born and my only memories of her, albeit fond, are of her diminished self. My father has told me about how kind, warm and generous his mum was, but Alzheimer’s changed her personality and made her short-tempered, intolerant and at times aggressive. She was nothing like the big-hearted and loving wife and mother her family knew so well. In her final months, she was unable to recognise my dad, and that was heart breaking for him and the rest of the family. I remember that distinctly.

As a young boy, it was difficult for me to understand why she kept asking if she was a pest and required an answer every time. She seemed remote and at the time I did not know why. On one visit to us in Orkney, when my grandfather was admitted to hospital for an operation, she insisted on going to the shops to buy sweets for my brother and me, but would not hear of anyone taking her. In the end, my parents had to compromise, so I went with her: a four-year-old guiding and making sure a 71-year-old found her way and got home again.

I cannot imagine how difficult it must have been for my grandfather, my dad and my auntie to watch that slow decline in someone who was once central to the whole family—a war-time wife and mother, and a proud, capable and clever woman. The way my grandfather cared for her well into his 70s was phenomenal and incredibly touching. When she was hospitalised, he visited her twice a day, his own health suffering after years of devoted care and worry.

It is difficult not to speak about the negative impact of Alzheimer’s because the results are real and devastating. It is also difficult to see beyond the illness, when for so many loved ones that is what dominates their daily lives for many years, but wonderful work going is going on to help people with different forms of dementia and their families. In my area, NHS Lanarkshire is working with Dementia Friends Scotland and Alzheimer Scotland to run a dementia friends programme at Wishaw general hospital that supports staff to recognise the signs of dementia and supports them in recognising that people with dementia can live fulfilling lives when given the care, support, respect and dignity they deserve.

It is important to put on the record the five key messages of the dementia friends programme: dementia is not a natural part of ageing; it is caused by brain disease; it is not just about losing your memory; it is possible to live well with dementia; and there is more to the person than dementia. It is important that we are all mindful of our language and actions. This debate is helpful in highlighting some of the issues that the dementia friends work so hard to bring to the fore. We all recognise the challenges faced by those with dementia and their families. We cannot hide away from them. They are faced from diagnosis through to end-of-life care.

If I had more time, I would have liked to touch on some of the Scottish Government’s excellent work. I am glad that my hon. Friend the Member for Argyll and Bute (Brendan O'Hara) mentioned it and I thank him. In February, they introduced the Carers (Scotland) Bill, which enshrines in law for the first time in Scotland the rights of carers, coupled with a commitment, if re-elected, to raise the level of carer’s allowance to match that of jobseeker’s allowance.

I am grateful for the opportunity to speak today and I thank the hon. Member for Strangford for raising the matter.

[Graham Stringer (in the Chair)]

I thank hon. Members for co-operating with the time limit on speeches, but if I am to get the last two speakers in, I must reduce it to three minutes.

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[Debbie Abrahams (Oldham East and Saddleworth) (Lab)]

I add my congratulations to the hon. Member for Strangford (Jim Shannon) on his exceptional speech and on securing the debate. It is a pleasure to speak, however briefly, in the debate as a co-chair of the all-party parliamentary group on dementia, as the only MP—I think that is still the case—who is a dementia friends champion, and as a former carer for my mum, who had Alzheimer’s disease. As we have heard today, if anyone’s life has not already been touched by someone who has dementia, it soon will be.

I commend the Government for their commitment and, in particular, the Prime Minister’s challenge and the investment in research funding that was announced last year at the World Health Organisation’s first ministerial conference on global action against dementia. It needs global action; we cannot act in isolation. It is estimated that by 2018 the global cost of dementia will be $1 trillion. I therefore ask the Minister to update us on the longer-term plans for building on that research investment and, specifically, what funding has been set aside to meet the challenges that make up the Prime Minister’s challenge on dementia and whether we are on track.

In addition to research, we need to ensure that hospital services take into account the specific needs of people with dementia. We know from the recent Alzheimer’s Society campaign, “Fix Dementia Care”—my hon. Friend the Member for South Shields (Mrs Lewell-Buck) mentioned some of the results—that 57% of carers, families and friends of people with dementia felt that the person they cared for was not treated with understanding or dignity in hospital; only 2% of hospital staff understood the specific needs of someone with dementia. We obviously need to address that. Could I put in a plug for the APPG report? Seven out of 10 of the people in hospital are not actually there for their dementia, but for something else. We have a report coming out next Wednesday on dementia and comorbidities, and I hope that people will be able to join us for that.

I am sure that my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley) will mention this in her winding-up speech, but we cannot divorce the issues in relation to social care from dementia care. I called on someone, just in a regular door-knock, and she obviously had dementia. She was on her own. She greeted me with an empty medication bubble pack and just said, “I don’t know what to do.” Too many people are isolated in that way. So many demands are placed on family carers. I hope that the Minister can address some of those issues.

[Graham Stringer (in the Chair)]

We have gone slightly over time because of the unusual circumstances, so could the Front-Bench spokespeople bear that in mind? You have marginally over seven minutes, and that will leave just over a minute for Jim Shannon.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

Seven minutes?

[Graham Stringer (in the Chair)]

Yes.

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[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?