Living with Dementia

Jim Cunningham Excerpts

Tuesday 25th June 2019 Westminster Hall

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

It is lovely to see you in the Chair, Mr Paisley. I thank the Backbench Business Committee, which granted the debate, and I want to recognise my hon. Friend the Member for Cambridge (Daniel Zeichner) as its co-sponsor. I also thank the Alzheimer’s Society, which provides superb support to the all-party parliamentary group on dementia, and the parliamentary digital team for promoting the debate. We hope to hear the views of many people from across the country on the recommendations in the report we shall discuss.

The subject of dementia and people living with dementia is particularly close to my heart. As many Members will know, my mum was diagnosed with Alzheimer’s disease at 64 and I was one of her principal carers. Having had that caring experience and seen some of the issues my mum faced, I wanted to raise awareness about dementia and the many different brain diseases that cause it. As many will know, dementia is now the leading cause of death in the UK, having overtaken heart disease and cancer. It is estimated that 850,000 people in the UK have a dementia, and Alzheimer’s disease is the most common. That is expected to increase to 2 million by 2050. Globally, there will be 152 million people living with dementia by 2050—a 204% increase. If there is anyone who does not now know someone with dementia, they soon will.

There is already much work under way at the UK Dementia Research Institute, where there is a search for programmes to identify people at risk of different dementia types and prevent them from contracting the disease, as well as for treatments and cures. In spite of the commitment by the former Prime Minister, David Cameron, to invest in dementia research, it still receives only one tenth of the research funding that cancer receives. However, there is also a need to invest in dementia research that could improve the lives of people affected by dementia today. I have campaigned with many others to raise the issues affecting people living with dementia, including becoming the first MP to be a Dementia Friends champion, working with Oldham Dementia Action Alliance to develop a dementia-friendly Oldham and Saddleworth, and undertaking various all-party group inquiries on how to improve the quality of life of people living with dementia.

The report from our latest inquiry, on dementia and disability, was launched last week. More than 2,500 people affected by dementia responded to our call for evidence—one of the largest responses to any all-party group inquiry. What the respondents had to say is very important. According to the Equality Act 2010 and the United Nations convention on the rights of persons with disabilities, dementia is a disability. As one family carer put it:

“If this isn’t a disability then I don’t know what is.”

However, the all-party group was told that society is lagging behind in that understanding and failing to uphold the legal rights of people with dementia. Evidence presented to the inquiry revealed that, across the country, the disability rights of people with dementia are not being upheld. Shockingly, 98% of the survey respondents thought that people living with dementia are treated differently from people with other health conditions or disabilities. They believe that that is due to the hidden nature of dementia, and the stigma that surrounds the condition. That is simply not good enough, and we need to do more.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate my hon. Friend on obtaining the debate, and those who supported her. I hope she will touch on the cost of care. The cost of looking after people with dementia is astronomical, as it is with care generally. I hope she will also touch on progress with dementia research.

[Debbie Abrahams]

I thank my hon. Friend, who anticipates me. I shall certainly talk about social care in relation to people living with dementia and their carers. My speech is focused on our inquiry report, but other hon. Members may want to touch on progress being made in research.

A central finding of the inquiry is that the public, employers, organisations, Governments and public bodies need to do more, and need to recognise the rights of people with dementia. The inquiry also revealed that a range of societal barriers prevents people with dementia from living independently. Action needs to be taken across a number of key areas to ensure that people with dementia receive the protections and safeguards provided by legislation and convention. The key areas that were identified as having a direct impact on people’s daily lives include employment, social protection, which is also called social security or welfare benefits—I consider that a misnomer because most people who receive so-called welfare benefits have contributed, so they are an entitlement, not a benefit—social care, transport, housing and community life.

On employment, the importance of work in giving people a sense of purpose, self-esteem, status, companionship and income was raised. Work can also provide a routine. Without it, people can feel a loss of identity and sense of purpose. One person with young onset dementia told us:

“I applied for so many jobs and I just got rejections. I used to lecture at a university and now I can’t get a job collecting trolleys. Any job is worthwhile. Not having a job destroys self-esteem.”

At the launch of the inquiry report last week we heard of a woman who had worked in a Government Department and had been diagnosed with early onset dementia. She became ill because of the condition, was then disciplined about that and, ultimately, was forced to take ill-health redundancy. I know that the Minister will be as concerned as I am about that disgraceful position. If Departments are setting out how we should lead, we must make sure we have our own house in order.

There needs to be more awareness among both employers and employees of the employment rights of people with dementia. People need to feel empowered to tell their employers about their diagnosis and employers should feel supported in fulfilling their responsibility to make reasonable adjustments so that people with dementia can continue to make a meaningful contribution in the workplace. The Government have a hugely important role to play, by providing guidance and support for employers. The Access to Work programme could go some way to addressing the unmet needs of people with dementia in relation to employment. However, as I know the Minister recognises, that is a small pot of money, which currently supports only about 35,000 of the 4 million or so disabled people who are fit and able to work. We need to make sure that that is extended.

In relation to social protection, people raised issues about the extra costs associated with living with a disability. Access to extra financial support can provide a lifeline for people with dementia and help people to continue getting out and doing the things they enjoy. One of the key challenges for people affected by dementia is knowing what financial support is available to them. One family member told the all-party group that they felt that

“people with dementia are effectively ignored by the disability benefits system.”

People with dementia and their carers need access to more support to enable them to know what financial help they are entitled to and how to make a successful claim. The Minister knows my views on both the fit-for-work and personal independence payment assessments. Until those assessments are scrapped, people with dementia deserve to be assessed by professionals who understand the condition, and they should not have to undergo unnecessary reviews or reassessments, as currently happens.

Assessment processes need to be clear and appropriate for people with cognitive impairments. That is why we are calling for the Government to mandate the Department for Work and Pensions to convene an expert group to review access to social protection for people living with dementia and their carers, recognising their specific needs. This group must include those who are experts by virtue of their own lived experience. The Government should also mandate the DWP to exempt personal independence payment claimants below the state pension age and with a dementia diagnosis from reassessments, which are unnecessary and cause a lot of distress for people living with dementia and their families.

A further key issue was social care. The inquiry received considerable feedback about inadequate or inaccessible social care for people affected by dementia living in England. There are many ways to improve the lives of people with dementia, but it is difficult in the current context of the well-documented social care crisis across the country. It is now recognised that that social care crisis is a dementia crisis. We need to fix the broken care system, and I am proud to support the Alzheimer’s Society’s “Fix Dementia Care” campaign. I know the Minister is eager to publish the Green Paper as soon as possible, and I urge the Government to recognise that.

In the context of social care reform, I will mention the Alzheimer’s Society’s campaign for a dementia fund. The system of dementia care in this country is in urgent need of reform and extra investment. In May, I tabled early-day motion 2360 in support of the campaign, calling for a financial injection into the social care system in the short to medium term, allowing for greater provision of safe and quality care, longer visits and savings to the NHS. My EDM now has the backing of more than 100 MPs of all parties, and I know that thousands of Alzheimer’s Society campaigners have written to their own MPs as well. I would welcome a commitment from the Minister to look at the proposal, and her support in getting the Government to include a dementia fund in the forthcoming spending review, to end the unfairness for people with dementia.

Another key area is transport. Access to public transport can have a huge impact on the lives of people affected by dementia, helping to reduce loneliness and social isolation by linking someone to their community and friends, and providing links to essential services such as necessary respite care. Access to public transport is therefore critical to maintaining someone’s quality of life. However, accessing transport can be very challenging for people with dementia. We heard many stories of how poor or inaccessible transport is, preventing people with dementia from participating in society, despite rights to accessible transport being enshrined in the Equality Act 2010.

Our report stresses the importance of reviewing any changes to bus and community transport services in the context of the public sector equality duty, to ensure that reasonable adjustments are made to enable people with dementia to continue to use public transport. Local authorities have a huge role to play here, and I hope that they will take steps to support people living with dementia in their communities.

On housing, the inquiry found that people with dementia are frequently being denied their right to live independently in their own homes, where they are able to make their own choices. It is important that people with dementia are supported as much as possible to stay as long as possible in their own home or to access suitable supported housing. People with dementia have the right to personal choice over where and how they live. We believe that people living with dementia must have access to adaptable housing, trained home care staff, and specialised supported housing schemes.

The final area is community life. The evidence supplied to our inquiry reaffirmed the importance of supporting people with dementia to continue to lead full and independent lives. That means creating communities where no one is excluded or has to face dementia alone. The all-party parliamentary group praised the work of the Dementia Friends programme, which helps to raise awareness of the condition and has created almost 3 million Dementia Friends in England, Wales and Northern Ireland—5,000 of them in my constituency of Oldham East and Saddleworth, a fact that I am very proud of.

A particularly relevant recommendation of the report is for Westminster to become the world’s first dementia-friendly Parliament, including ensuring that the parliamentary estate is a safe and welcoming place for people affected by dementia to work and visit. I have met a number of people today who are visiting Parliament; I hope they will be able to report positively on how they have been received today.

Our report is wide-ranging and covers a number of different issues that need to be addressed if the disability rights of people living with dementia are to be realised. Over the coming months, the all-party parliamentary group on dementia will work with the Alzheimer’s Society and other partners to turn the report’s recommendations into reality. That has the potential to have a huge impact on the lives of people living with dementia and their carers, and I hope that everyone in the Chamber today and beyond will offer their support.