Living with Dementia

Julie Cooper Excerpts

Tuesday 25th June 2019 Westminster Hall

[Julie Cooper (Burnley) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Paisley. I thank my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for securing today’s debate and for her excellent work on the all-party parliamentary group on dementia, championing awareness of dementia and support for those affected. I also thank Members present, particularly the hon. Members for North Ayrshire and Arran (Patricia Gibson) and for Chichester (Gillian Keegan), who have shared very personal stories about how they and their families have been affected. I pay tribute to carers, both paid and unpaid, who do so much to make life bearable for those who are suffering—I apologise for saying “suffering”, but personal experience teaches me that that is the reality.

Dementia is a life-changing disability that affects millions of people in the UK. Some 850,000 people in the UK have been diagnosed with dementia, including more than 1,000 people in my constituency of Burnley. More than 24 million people have a friend or family member who lives with dementia, and that figure is increasing all the time. Alzheimer’s Research UK estimates that one in three people born in the UK this year will develop dementia in later life, and as the hon. Member for Witney (Robert Courts) has reminded us, this is not just a feature of old age; people of all ages can suffer.

Dementia has a huge human cost. My grandmother suffered with dementia—she did suffer—and, regrettably, the support that was needed was not available to my family. Dementia also has a huge impact on resources: each year, the total cost of dementia to the UK is £26 billion, and that cost is expected to more than double in the next 25 years. Given the scale of the issue, it is fitting that Members from all parts of the House have raised their voices today to call for action.

Members have made it abundantly clear that action is needed in three main areas. First, prevention is crucial: The Lancet reports that 30% of cases of dementia could be avoided through an increased understanding of risk factors and the implementation of basic lifestyle changes. It is imperative that the Government lead on enhancing awareness among the general public, and on celebrating dementia-friendly projects and looking at other processes. I am grateful to my hon. Friend the Member for Vale of Clwyd (Chris Ruane) for reminding us of the impact that mindfulness can have on preventing the development of dementia.

In the area of research, it is clear that dementia is the poor relation; as my hon. Friend the Member for Cambridge (Daniel Zeichner) has so expertly reminded us, dementia is decades behind other conditions. Alzheimer’s Research UK has asked, very reasonably, that the Government commit to investing an amount equal to just 1% of the total societal cost of dementia into research. After all, the UK has some of the best scientists in this field, although there are simply not enough of them; they are outnumbered four to one by cancer specialists. The 2015 challenge on dementia, which has been mentioned, was most welcome but does not go far enough, and I look forward to hearing how the Minister might take that forward.

While prevention measures and research to achieve early diagnosis and future treatment are still so inadequate, it is vital that those who are diagnosed with dementia are given access to a comprehensive package of support. That is not just a job for the authorities: we have heard many Members describe pockets of really good practice in their constituencies, and I pay tribute to those who are delivering on the ground. However, there is no doubt that Government cuts to social care funding amounting to £7 billion since 2010 have taken their toll—nowhere more so than in the area of social care for those who suffer with dementia.

We often hear talk of the so-called dementia penalty, which is not surprising, as those affected by dementia regularly pick up two thirds of all care costs. Dementia patients often require more specialised and more expensive care. The associated costs can be as high as £500,000, and they almost always exceed £100,000. It is clear that patients with dementia are treated differently from patients with other conditions and disabilities. The failure to fund care adequately is placing additional pressure on NHS resources: last year, there were 70,000 avoidable hospital admissions for people diagnosed with dementia. That causes unnecessary suffering for patients and their families and is hugely wasteful of NHS resources.

What can be done to right this wrong? The recommendations of the all-party group on dementia could be implemented without delay. Dementia must be fully recognised as a disability, with sufferers afforded the same rights, protections and dignities as any other disabled person. Local authorities and health providers need to collaborate to offer a package of support that is both comprehensive and accessible; as my hon. Friend the Member for Bradford South (Judith Cummins) has stressed, it is no good having help available if that help is difficult to access. The eagerly anticipated social care Green Paper must fully address the needs of those living with dementia. The UK Parliament must lead by example, becoming the first dementia-friendly Parliament and actively promoting and supporting dementia-friendly communities everywhere. All members of health and wellbeing boards should be obliged to become Dementia Friends. Most crucially, the Government’s plans for the NHS and care workforce must properly reflect the needs of people with dementia.

The situation is urgent, and now is the time for the Government to listen. As part of the comprehensive spending review, the Government must introduce a dedicated £2.4 billion dementia fund to cover the additional costs of delivering dementia specialist care, and end the inequity between dementia and other diseases that currently leaves affected families facing astronomical care costs. That fund would enable timely access to an integrated package of support and help to facilitate specialist training for all care workers, equipping them to deliver high-quality dementia care.

Will the Minister commit today to addressing the long-term needs of dementia sufferers in the social care Green Paper and in the NHS and social workforce strategy? Will she commit to increasing research into the development of new treatments? Will she go beyond warm words and ensure that those with dementia are not forgotten in the comprehensive spending review? Will she support the establishment of a dedicated dementia fund to give people the support they are desperately crying out for?