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 in the coming decades.

The Dementia Action Plan for Wales (DAP) 2018 – 2022 sets out a clear vision for “Wales to be a dementia friendly nation that recognises the rights of people with dementia to feel valued and to live as independently as possible in their communities.”

Our West Wales Regional Dementia strategy informs the development of person-centred dementia pathways, co-produced with users and carers.

Key messages are as follows:

• The incidence of dementia on the Quality Assurance and Improvement Framework (QAIF) disease register in Hywel Dda in 2019-20 was 0.7%, in line with the Welsh national average of 0.7%

• In 2016-17 dementia diagnosis rates were one of the lowest in Wales at 45.6% indicating that prevalence rates are likely to be closer to 1.4% although, the number of those diagnosed has increased an average of 3% per annum to 2,947 in 2020

• 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.

Dementia in people aged less than 65 is described as early onset dementia, young onset dementia or working age dementia. It is estimated that 1 in 1,000 people in Wales have early onset dementia. This figure is slightly higher in Carmarthenshire and Pembrokeshire, and higher still in Ceredigion.

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). The following chart shows the numbers of people with early onset dementia in Pembrokeshire, Ceredigion, Carmarthenshire and Wales.

Older adults in the West Wales region have increasingly complex needs. There are an estimated 6,884 people over the age of 65 with dementia in West Wales, 1,322 in Ceredigion, 2,358 in Pembrokeshire, and 3,204 in Carmarthenshire. Projections show that there will be 10,897 people over the age of 65 with dementia in West Wales by 2035, 1,993 in Ceredigion, 3,831 in Pembrokeshire, and 5,073 in Carmarthenshire.

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.

A Regional Dementia Strategy has been commissioned in collaboration with a range of partners across West Wales. The aim of the strategy is to identify current and future care and support needs, to ensure that the support provided for people living with dementia in West Wales is co-produced, person-centred and based on best practice.

The Dementia Action Plan for Wales (DAP) sets out the Welsh Government’s vision for creating a dementia friendly Wales, developed with those who know most about what needs to be done to improve truly person-centred dementia services – those with lived experience of dementia, their families and carers and service providers. As a result of views expressed in consultation and engagement processes the action plan is structured around outcomes which follow a pathway approach to dementia care to include the following:

• Risk reduction and delaying onset

• Raising awareness and understanding

• Learning and development

• Recognition and identification

• Assessment and diagnosis

• Living as well as possible, for as long as possible with dementia

• Care and support for increasing needs

As referenced in the main body of the chapter, to support implementation of best practice in alignment with the DAP, a Regional Dementia Strategy has been commissioned. Whilst recognising that the strategy will drive forward innovation and integration and identify gaps and areas for improvement, a range of services aligned with the aims of the DAP are available currently:

Risk reduction and delaying onset:

• Delta Connect – a telecare service providing individualised wellbeing assessment and personal stay-well plan.

Raising awareness and understanding:

• A 3rd sector-led broad umbrella initiative – ‘West Wales is Kind’ campaign to incentivise random acts of kindness

• PAVS Dementia Supportive Communities Development Officer.

Learning and development:

• Development of a dementia training framework

Assessment and diagnosis:

• Memory assessment services

Living as well as possible, for as long as possible with dementia:

• Fast Access Community Teams in all parts of West Wales providing multi-disciplinary support to people in their homes

• Admiral Nurse Team

• Journey through dementia support groups.

Care and support for increasing needs:

• Respite provision

• Dementia Well-being Community Team

• End-of-Life Care Service Provision including the following:
  • Paul Sartori and Marie Curie commissioned to deliver Advance Care Planning training
  • Marie Curie senior nurses help people with advanced dementia to access palliative and end of life care services in hospital, at home and in care homes across the region
  • Paul Sartori foundation provide education to a variety of audiences, including their own staff and others across the health board
  • Commitments from the DAP have been included in the Regional Palliative and End of Life Care strategy under development also.

The list below identifies gaps and areas of improvement that have become apparent during our engagement process. The list however is not exhaustive; it is to be expected that as the strategy and new pathways are developed, further gaps and areas for improvement will be identified and the strategy will be amended accordingly.

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

• Continuing 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

• Improving co-production of services by including PLwD in service design

• Agreeing a set of delivery principles to underpin development of pathway models

• Building 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.

• Increasing 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

• Developing more consistent person-centred care across the region

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

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

• Continuing 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

• Improving research into dementia by involving care homes in the region in research opportunities

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

• Continuing the development of a “hub” or 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

  • Memory 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.

References:

1. [1] Tahira AC, Verjovski-Almeida S, Ferreira ST. Dementia is an ageindependent risk factor for severity and death in COVID-19 inpatients. Alzheimers Dement. 2021 Nov;17(11):1818-1831. doi: 10.1002/alz.12352. Epub 2021 Apr 21. PMID: 33881211; PMCID: PMC8250282.
2. [2] Hackett RA, Steptoe A, Cadar D, Fancourt D (2019) Social engagement before and after dementia diagnosis in the English Longitudinal Study of Ageing. PLoS ONE 14(8): e0220195.