Modern Service Framework for Dementia and Frailty Debate

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Department: Department of Health and Social Care

Modern Service Framework for Dementia and Frailty

Baroness Nargund Excerpts
Thursday 9th July 2026

(1 month ago)

Grand Committee
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Baroness Nargund Portrait Baroness Nargund (Lab)
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My Lords, I am grateful to the noble Lord, Lord Weir of Ballyholme, for securing this important debate, and I welcome the Government’s commitment to delivering the modern service framework for dementia and frailty. Dementia is not gender neutral. We may not have a cure at the moment, but we can cure the inequity in access to research, clinical trials, early diagnosis and effective treatments.

In England, more than 500,000 people now have a recorded diagnosis of dementia, and nearly two-thirds of them are women. Dementia and Alzheimer’s disease have been the leading cause of death for women in England and Wales since 2011. Almost two-thirds of unpaid carers for people with dementia are also women. Women live longer, but longevity alone does not explain this disparity. The APOE4 gene increases women’s risk of Alzheimer’s disease more than men’s.

The emerging evidence suggests that the hormonal changes associated with menopause may increase vulnerability. The hormone oestrogen is vital for memory formation, as it is essential for effective communication between neurons in the part of the brain involved in memory. The link between dementia and menopause extends beyond misdiagnosis, yet until recently, the relationship between menopause and dementia received remarkably little scientific attention. We need more research about the risks of developing dementia in women who undergo early or premature menopause. As the noble Lord, Lord Weir, mentioned, we need to work on reducing risk and, where possible, identify who is at high risk of developing dementia. Part of that involves identifying the risk in women going through early or premature menopause.

This has a human cost. Karen Barber from Essex devoted more than a decade of her life to public service at HM Passport Office and HMRC. In her 50s, her memory and organisational skills began to deteriorate. Her symptoms were repeatedly attributed to menopause and stress. She was repeatedly told that her symptoms were “in her mind”. Without a diagnosis, she was dismissed from her job for poor performance. More than 10 years later, and only after paying privately for a specialist assessment, she was finally diagnosed with young-onset dementia. Karen’s story is not simply one of illness; it is a story of delayed diagnosis, lost employment, financial hardship for the family and a system that failed to recognise the disease at the time.

For too long, medicine has been built around a male standard. Women’s underrepresentation in research and the failure to analyse differences between the sexes have left important gaps in our understanding of dementia. As we have known for a long time, studies show that women are underrepresented in dementia clinical trials relative to the burden of disease they bear. One review found that, among 118 dementia trials, only eight reported outcomes separately for women and men. In several studies, treatment benefits appeared greater in men, reminding us that biological sex may influence how medicines work. If we do not measure these differences, we cannot deliver gender-based care and the truly personalised, precision medicine that everyone deserves. I therefore warmly welcome the framework’s commitment to expanding dementia clinical trials, which is absolutely necessary and urgent, and the confirmation that participation will increase to 2,000 people over the next five years.

Innovation reduces inequalities only if it is designed for everyone. This is not only a health challenge for women, it is also an economic one. Women already face a substantial gender pension gap, and many leave the workforce prematurely because of caring responsibilities or their own ill health. For women with young-onset dementia, like Karen Barber, years of lost earnings, delayed diagnosis and interrupted careers compound lifetime financial disadvantage. Preventing dementia becoming a pathway into poverty should be part of our national ambition. Women bear a double burden when it comes to dementia, as I said earlier—I repeat it. They constitute the majority of those living with dementia and the majority of those caring for people with dementia. Too often, they also constitute the majority of those overlooked by research, clinical trials and clinicians.

If this modern service framework is truly to be once in a generation, it must place women not at the margins but at its very heart when it comes to clinical trials and early diagnosis. As the noble Lord, Lord Weir, said, this is a huge opportunity to achieve that. Can my noble friend the Minister assure the Committee that sex and gender differences will be embedded throughout the modern service framework, from research funding and clinical trial design to the adoption of new diagnostics and treatments with proportionate representation of women? That includes ethnic minority women, because there are some differences in clinical trials and mandatory reporting of sex-disaggregated outcomes. If we are serious about precision medicine, which we should be, it must be precision medicine for all women.