Draft dementia strategy for Wales 2026 to 2036: consultation response
I was grateful for the opportunity to meet Sarah Murphy MS, Minister for Mental Health and Wellbeing, on 2 March 2026, to discuss the Welsh Government’s draft Dementia Strategy for
Wales ahead of her departure on maternity leave. I am writing as promised to follow up our discussion with a formal response to the consultation.
I broadly support the proposals set out in the consultation document. However, I should like to offer comments and indicate additional matters for inclusion in the future strategy. I am also concerned that, without effective governance and accountability, the existing gap between policy and practice will continue.
Risk reduction and prevention in dementia
I support the aim of applying a dementia lens to population health and developing a public health approach that tackles brain health across every sector.
Given the Cabinet Secretary for Health and Social Care’s announcement that Wales will become a Marmot nation, I should like to see the strategy set out how local authorities can leverage the wider determinants of health to reduce risk and prevent dementia. It would be helpful to examine what local authorities at the forefront of the Marmot agenda in Wales, such as Torfaen and Blaenau Gwent Councils, can contribute to risk reduction and prevention in dementia.
On the other hand, I am also concerned that the 51,226 people living with dementia in Wales, their carers and family members should not be stigmatised by messaging around risk and prevention. There is a danger that people who already have dementia may feel blamed for not looking after themselves well enough to prevent dementia. This is something that will need appropriate messaging and careful handling.
Raising awareness and understanding of dementia
I was pleased to hear at our meeting that the Welsh Government understands that the strategy will need to be made real and relevant to individuals, and that communications and messaging will need to reach people in their homes and communities, and that officials are considering how to achieve this.
It will be essential that the strategy uses language that is understandable to ordinary people, that it is rights-based, and in particular that it enshrines everyone’s right to person-centred care. Copies of the strategy should be easily available to anyone who wants them. As I have emphasised previously, it is essential that older people and others who are not online can take part fully in consultations and access all relevant information in non-digital formats
Improving dementia diagnosis, treatment, care and support
Diagnosis
I am conscious that there is currently inequitable access to diagnostic capacity in Wales and long waiting times for secondary diagnostics. I agree that the strategy must ensure equitable access.
I am concerned about the lack of the digital infrastructure to deliver diagnosis, treatment and care efficiently, with many NHS systems still largely paper based. I believe that the strategy should ensure that the NHS has the appropriate digital capability, including AI, to identify need from healthcare and other records, and make proactive offers of diagnostic testing, treatment, care and support.
The evolution of digital technology carries both great opportunity and great risk that older people will be designed out of data systems through digital ageism. The strategy should ensure that digital infrastructure design draws on the work of the World Health Organisation and Public Health Wales Collaborating Centre for Digital Health Equity as well as the Centre for Digital Public Services’ Digital Service Standard for Wales.
Care and support
I was disappointed to see how little mention allied health professionals, social care services and local support groups who enable people to live well with dementia in their homes and communities received in the draft strategy compared with other NHS professionals and the statutory sector. I am also concerned that, as things stand, community-based support may not be available to everyone who needs it. In my view, the strategy should include incentives for local authorities to shift resources into holistic community-based and community-led forms of support that keep people out of statutory services for as long as possible. This would be in line with the Marmot approach already adopted in Torfaen and Blaenau Gwent.
The draft also contains very little on hospital care for people living with dementia. I am aware that the All Wales Dementia Friendly Hospital Charter was published in 2022 under the Dementia Action Plan. However, older people’s experience is that consistent implementation across Wales still has some way to go. I would expect implementation and performance management to be completed under the new strategy.
Care homes
The draft strategy does not include any proposals for ensuring that all care homes understand and support people’s rights to voice, choice and control. Anecdotal evidence suggests that many older people’s experience is very much one of being “done to”. The new strategy should take account of work such as Care Inspectorate Wales and Social Care Wales’ Positive Cultures project and require and reinforce practice which delivers voice, choice and control in care homes.
Nursing homes
The under-supply of nursing home places for people with advanced dementia is of great concern and has been raised with me throughout my time as Commissioner by older people’s organisations, and which I have discussed with the National Commissioning Board and the National Office for Care and Support. I have recently heard of an older person from North Wales who had to be accommodated in Bristol, because of the lack of places near their home. This is unacceptable. The draft strategy does not address market issues in service provision and the Rebalancing Care and Support agenda. This is a serious omission which the new strategy should rectify.
NHS Continuing Healthcare (CHC)
I have also heard through my Advice and Assistance service and on my engagement visits about older people and their families, many of whom are living with advanced dementia, who are experiencing great difficulty with the assessment process for NHS CHC and afterwards with what appear to be requirements for top-up fees.
CHC is intended to secure a complete NHS-funded package of care for people whose primary need is a health need, regardless of setting. In practice, systemic barriers to assessment, inconsistent application of the Decision Support Tool, delays, and limited independent scrutiny risk: unlawful or inappropriate charging for care that should be NHS-funded; inequity between health boards and between Wales and England; procedural unfairness for individuals lacking capacity and their families, and escalating complaint and dispute costs, including avoidable Ombudsman involvement and potential litigation.
I understand that the National Office for Care and Support is taking steps to address these issues. The strategy should also encompass and support this work, which I hope will lead to considerable improvement in the experiences and outcomes of some our most vulnerable citizens.
Tackling inequalities
I fully support the aim of addressing inequalities in dementia care to ensure that all individuals, regardless of background or circumstance, have equitable access to timely, accurate, and compassionate support.
However, although the draft strategy does reference ethnicity and culture, I was disappointed that it does not include more detailed consideration of older people with other protected characteristics, such as sexual orientation, which can have major implications for their care needs and their wellbeing.
It may also be helpful if the new strategy references directly the relationship between dementia and neurodivergence. Whilst there is no single proven direct link between being neurodivergent and developing dementia, some neurodivergent traits – such as memory lapses, communication differences, or sensory overload – can appear similar to early dementia. There is also significant underdiagnosis of neurodivergent older people, meaning that lifelong traits may be misinterpreted as signs of cognitive decline.
I would also like to see the new strategy address in more detail the intersection with high social inequalities, as people in lower socioeconomic groups face a higher risk of developing dementia and often experience reduced access to healthcare and support.
Finally, my recent visit to HMP Parc highlighted the particular challenges of providing appropriate diagnosis, treatment, care and support to meet the needs of older people in prison. This should also be considered in the new strategy, which gives too little focus to prison settings, despite the fact that dementia is estimated to have a higher prevalence in prison than in the community for comparable age groups (Nuffield Trust, 2023). Additionally, dementia can often go unrecognised or misinterpreted as behavioural issues leading to distress and needs not being met. Prison staff have reported low confidence in recognising and managing dementia exacerbated by a lack of training (Heathcote et al 2024, Nuffield Trust 2023b, Purewal 2020) which is a specific area that needs to be addressed. Supporting older people in prison with dementia is not only a healthcare necessity but a human rights issue.
Welsh Language
I fully support the recognition in the draft strategy that we need to make greater progress in providing health and care services for people living with dementia through the medium of Welsh and the proposed measures for doing so.
Ensuring high quality Welsh language provision at every stage of the dementia pathway is essential to delivering person centred, equitable care in Wales. As the consultation document recognises, for many individuals—particularly older people and those living with dementia—the Welsh language is not simply a preference but a core part of their identity, communication, and sense of safety. Dementia can lead to people reverting to their first language, losing confidence in a second language, or becoming unable to express themselves fully unless supported in Welsh.
This means that assessment, diagnosis, post diagnostic support, and ongoing care must all be designed and delivered on the basis of “the Active Offer,” ensuring that Welsh language services are available without individuals or families having to request them. Consistent, proactive Welsh language provision not only improves diagnostic accuracy and therapeutic outcomes but also upholds people’s rights, dignity, and wellbeing throughout their dementia journey.
Supporting unpaid carers of people living with dementia
It is essential that the new Dementia Strategy for Wales dovetails with the new National Strategy for Unpaid Carers. My written evidence to the Senedd Health and Social Care Committee inquiry into improving access to support for unpaid carers is generally applicable and provides several illustrations of the problems faced by unpaid carers of people living with dementia. I await the inquiry report with interest.
My report on Ageing without Children (published in June 2025) is also relevant to the strategy. While the report focuses on the benefits as well as the challenges of ageing without children or family, the assumption that everyone has family support on hand to provide informal care needs to be challenged. The strategy should reflect the relevant recommendations of my report to ensure that the needs and circumstances of those who are ageing without children are reflected.
Supporting the workforce
Given the ten-year span of the strategy, I was surprised to find little reference to the implications of an ageing workforce or to the opportunities and risks of rapidly evolving technology, particularly AI.
There is little evidence of any meaningful attempt to understand the impact of AI and demographic change on the workforce over the next ten years.
Supporting dementia research and innovation
In September 2025 I published my Priorities for the Next Welsh Government, calling for a range of action in key areas. One crucial area is the meaningful engagement of older people in all areas of research, including biological, behavioural, social, and environmental research, from basic research through to policy and service redesign across the whole spectrum of prevention.
Older people are currently underrepresented in research. Those who do participate in research often represent a narrow section of the population. To shape effective prevention, diagnosis, care and support, we need to involve older people from all communities, including people living with dementia and their loved ones, and deepen our understanding of how healthcare, finances, relationships, housing, employment, poverty, and community environments interact as we age and, the case of the strategy, become affected by dementia.
Suitable governance and accountability arrangements to ensure the strategy is delivered
I was pleased to accept the Welsh Government’s invitation to become a standing member of the National Dementia Ministerial Board. Robust governance arrangements are essential to provide oversight and scrutiny of implementation. My own objectives as Older People’s Commissioner and a member of the Board will include advocating for:
- The involvement of older people with lived experience of dementia from all parts of society at all levels of governance
- Building on the co-production approach which has been positive to date
- Ensuring the implementation of the new strategy makes a difference to the lives of people affected by dementia and eliminating any disconnection between policy intentions and experiences
- Person-centred metrics alongside system metrics, to ensure that reporting reflects actual experience.
Conclusion
I hope that you find this response helpful in the further development of the new strategy. My office would be happy to discuss these comments further.
Yours sincerely,
Rhian Bowen-Davies
Older People’s Commissioner for Wales
