Dementia

As life expectancy and inward migration of older people impacts on the percentage of older people in the region, the number of People Living with Dementia (PLwD) in West Wales is expected to increase significantly in the coming decades with subsequent impacts on care and support services as well as unpaid carers.  However, whilst age is a significant risk factor in developing dementia, dementia is not an inevitable part of ageing.

Key messages are as follows:

• Estimated number of people living with dementia in West Wales is 6,161

• Total number of people living with a diagnosis of dementia in West Wales in 2025 is 3,210

• In 2024 the dementia diagnosis rate in West Wales was 52.1%

• Estimated that 2,951 in West Wales are undiagnosed with dementia

• There is a projected regional increase of 41% to 2030 (severe dementia) in West Wales, with variation as follows (West Wales MSR 2020): Carmarthenshire=41%, Ceredigion=37%, Pembrokeshire=44%

• Over thirty genetic, medical, lifestyle, cultural and societal factors have been identified, which impact the risk of cognitive decline differently depending on gender. Some of these factors increase risk more dramatically in women than in men.

• Older adults in the West Wales region have increasingly complex needs.

Prevention and Intervention

In 2020 research indicated that 12 modifiable risk factors account for around 40% of worldwide dementias, which consequently could theoretically be prevented or delayed (Dementia prevention, intervention, and care: 2020 report of the Lancet Commission)

Modifiable risk factors are those that we, as individuals, or that policymakers can influence.

Following latest analysis, the list of confirmed dementia risk factors has been increased to 14.  Two more than previously recognised and these relate to uncorrected vision loss and high cholesterol.

The researchers calculate that if, as a society and as individuals, we could completely address these 14 health and lifestyle factors it could prevent or delay nearly half (45%) of dementia cases.

Genetic risk factors aren’t listed and whilst is significant in atypical presentations, there is a need to consider whether this is a modifiable risk factor in it’s own right.

Other ‘prevention and intervention’ that is not considered by Lancet is diet - it talks of obesity, but does not mention the benefits of diet more broadly? 

Menopause/change in estragon levels is a risk factor - Influence of the Onset of Menopause on the Risk of Developing Alzheimer’s Disease - PMC – important to understand given it’s the leading cause of death in women and more women live with dementia than men.

 There is also evidence that bilingualism is a buffer for developing Dementia – which is relevant within our population and an issue given that we don’t have a measure to assess Welsh-English speakers.

For example, 

National: There were an estimated 42,426 older people (aged 65 and above) living with dementia in Wales in 2024. Of these, 23,770 patients were on the dementia register on 1^st April 2024, yet it is estimated only 56% of people suspected to have dementia were diagnosed. 

Furthermore, there is evidence to suggest around 7% of dementia cases in Wales are early-onset dementia, backed up with other estimates of 5%-9% of early onset dementia diagnoses in the UK, it is therefore anticipated that in West Wales, locally available bespoke support for early onset dementia will also needed.

Regional: According to the General Practice Disease Register: interactive dashboard July 2024: there were an estimated 6,161 people (aged 65 and above) living with dementia in West Wales 2024. 

There were 3,210 people with a dementia diagnosis in Hywel Dda University Health Board and 2951 people undiagnosed based on prevalence rates and general population data.  45% of those living with dementia diagnosis live in care homes acknowledging that many living in care homes don’t have a diagnosis.

(https://www.gov.wales/general-practice-disease-registers-interactive-dashboard)

General practice disease registers: interactive dashboard | GOV.WALES

There are approximately 103,100 people aged over 65 living in West Wales and estimates indicate that 63 in 1000 over 65 live with dementia, equating to approximately 6,495 over 65 living with dementia in West Wales.

Points of note:

Dementia remains the leading cause of death for females in Wales, with almost twice as many women dying from dementia than men in 2021. Early research indicates that women are twice as likely to develop Alzheimer’s disease as men, which could be associated with changes to the female brain during menopause, together with social and cultural factors, however work continues to understand this. (https://www.nature.com/articles/s41591-025-03564-3)

According to the Office of National Statistics the Care home resident population Wales: Census 2021 there are 3707 people aged 64 and over identified as care home residents. It has been estimated that 70% of care home residents have dementia on admission or develop it after admission, but that many do not have or receive a formal diagnosis of dementia (Aldridge et al 2024). A local survey concluded that 55% (1,315) of care home residents are live with a known diagnosis of dementia in Care Homes.

Deaths caused by dementia in Wales

National: Dementia and Alzheimer's disease was the leading cause of death in England and Wales in 2023, with 66,876 deaths (11.5% of all deaths); this percentage was higher than in 2022 (65,967 deaths, 11.4% of all deaths). https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregistrationsummarytables/2023

The image below depicts the male: female ratio of dementia deaths:

Source: Death registration summary statistics, England and Wales (2013-2021), Office of National Statistics.

The Deputy Minister for Social Services noted in May 2023 that the national census has confirmed that people are living longer, and that Wales is an ageing society. The census and other population projections suggest that we will see a very sizeable increase in those over 80 in the next few decades.

The biggest risk factor for dementia is ageing and By 2040, the number of older people living with dementia in Wales is projected to increase by 70%.

Source: Wittenberg et al. (2019). Projections of older people with dementia and costs of dementia car in the UK, 2019-2040. London School of Economics and Political Science.

Young Onset of Dementia

Young onset dementia is the onset of dementia when a person is under 65 years old. The symptoms of dementia may be similar regardless of a person's age, but younger people often have different needs, and therefore often require different support. There is a wide range of diseases that cause early onset dementia and a younger person is much more likely to have a rarer form of dementia than an older person. However, people under 65 do not generally have the co-existing long-term medical conditions of older people. For example, diseases of the heart and circulation. Younger people are usually physically fitter and dementia may be the only serious condition they are living with (Alzheimer’s Society, 2015).

National:

While dementia largely affects older people, it’s estimated 7.5% or 70,800 of the estimated 944,000 people living with dementia in the UK are living with young onset dementia where symptoms occurred under the age of 65

The estimated prevalence figure for young onset dementia, where diagnosis was between age 30—64, is 92 per 100,000 of the general population

About 3,700 people in Wales are living with young onset dementia

Prevalence rates for young onset dementia in minority ethnic communities are higher than for the population as a whole. People from these backgrounds are also less likely to receive a diagnosis or support.

People with a learning disability are at greater risk of developing dementia at a younger age. Studies have shown that one in ten develop young onset Alzheimer’s disease between the age of 50 to 65. The number of people with Down’s syndrome who develop Alzheimer’s disease is even greater

A graph showing the age specific prevalence on the dementia register as a proportion of all patients of that age group registered at a GP practice in Wales.

Source: Disease prevalence rates by age band and gender

Regional: In 2022 there were 84 patients on GP registers who are under 65 years old. Of those, 55 are in the 60-65 year age group. This gives West Wales a rate of 0.04% across the population in the adult population, which is very similar to the rate seen across Wales registers nationally. Only 5 patients on the GP registers were under 50 years old.  However, it is acknowledged that whilst the number of people living with young onset dementia may be small in comparison to over 65’s, there is typically a need for specialist services and bespoke support such as group activities for younger people living with dementia or specialist residential care, which may not be available locally (West Wales Dementia Strategy)

It is expected that as the strategy and pathways continue to be developed, further areas for improvement will be identified.

The gaps and areas for continued improvement have outlined the need for the following actions:

• Due to the numbers and ageing population, it is expected that current service provision is only able to reach 20% of the population living with dementia in West Wales and therefore continued investment is required.

• Future focus needs to be on the help and support available to people living with a diagnosis who are not currently being supported by the Dementia Wellbeing Connector Service.  Phase two of the Dementia Connectors role would enable more people to have access to help and a wellbeing plan.

• Continue to improve awareness, identification and diagnosis of dementia, so that people with dementia have a timely diagnosis and can access appropriate care and support and long-term care when and where required

• Improve co-production of services by including people living with dementia (PLwD) in service design

• Build on the Dementia Training Framework; the learning and development requirements of those supporting PLwD in communities should be reflected and addressed through organisational workforce strategies.

• Increase diagnosis rates in non-specialist community settings by:

Improving training and awareness of new dementia models within primary care, based on the Good Work Framework Supporting GPs, allied health professionals (AHPs) and nurses to make assessments

Improving quality of referrals into specialist care for those that require it

Continuing improvements in community support, training and help for PLwD to discuss their diagnosis, navigate/co-ordinate services, to build resilience and maintain balance across all aspects of their life

• Develop more consistent person-centred care across the region

• Ensure equal access to physical health services and treatment for PLwD, as poor physical health is an inevitable consequence of dementia

• Ensure any health issues are factored into person-centred planning and end of life care

• Continue improvements in awareness of and implementation of advance care planning and end of life care, so that PLwD die with dignity in a place of their choosing

• Continue to improving research into dementia by involving care homes in the region in research opportunities

• Build on emerging data and intelligence to inform future service development

• Continue the development of a single point of contact approach for PLwD to access information and support for:

• Support staff, including dementia support workers, admiral nurses etc

• Support groups for PLwD and their carers

• Access to local dementia services

• Training programmes for carers

• Activities for PLwD

• Dementia cafes

• Dementia Assessment Service (MAS) clinics

• Finance/legal/benefits advice

• Involvement in research opportunities

The COVID-19 pandemic has had a disproportionately negative impact on PLwD (The Impact of COVID-19 on People Affected By Dementia (alzheimers.org.uk)) and dementia has also been shown as an age-independent risk factor for severity and death in COVID-19 patients [1].

Although the exact impact of COVID on the diagnosis and incidence rate of dementia is unclear, stakeholders have identified that COVID has impacted timely diagnosis due to late presentations.

There is also some concern that in some cases, COVID causes damage to the brain and long-term, this could lead to increased risk of developing dementia (How COVID-19 can damage the brain - BBC Future). However, full information on the impact of COVID upon those with dementia and their carers is not yet available.

Technology has been shown to contribute to patient and carer resilience during COVID. Just being able to communicate has benefits in allowing to sustain contact with previous activity groups and hobbies [2]. However, not all PLwD are able to adapt well to using technology and may require others present to support them in using technology, as they may be unable to do this independently due to their dementia.