Adult Mental health

This chapter should be read in conjunction with the following chapters: Older People; Healthy Lifestyles and Long Term Conditions; Physical Disabilities; Cognitive Impairment including Dementia; Adult Unpaid Carers; Asylum Seekers and Refugees; Substance Misuse; Secure Estate; Armed Forces Service Leavers (Veterans)

Recommendations

• Develop data systems to address the gaps in our knowledge
• Monitor the evolving understanding of the impact of COVID-19 on mental health
• Support housing transition to avoid homelessness for mental health service users
  Cardiff and Vale UHB and Cardiff and Vale of Glamorgan Local Authorities to:
• Commission enhanced peer support services to promote independence
• Redesign mental health services so that waiting times decrease and there is easy
  access to mental health services when in a crisis
• Co-produce meaningful outcome measures with mental health service users
• Assess the efficacy of novel interventions, for example in the Recovery College
  Third sector to:
• Promote independence and advocacy for people with mental health condition

Overview

The WHO definition of mental health is that: “Mental health is a state of well-being in which an individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and is able to make a contribution to his or her community.” (219). In this context, the term “adult” refers to those aged 18 and over. Measuring mental health in the population is frequently reliant on surveys based on samples of the population. The Office for National Statistics conducts an annual survey of well-being, for measures such as life satisfaction, feeling worthwhile, anxiety levels and happiness. For example, life satisfaction (a score from 0 to 10, where 10 is the highest possible level of satisfaction) has increased in both Cardiff and the Vale of Glamorgan overall, but has been higher in the Vale over the last 5 years. For the impact of COVID-19 on mental health, see section later on in this chapter.

According to findings from the National Survey for Wales, the percentage of people with a self-reported mental disorder has remained relatively stable over the last 3 years for Cardiff and the Vale of Glamorgan (see Table 13.1 below). This regional average masks a slight increase in the Vale of Glamorgan from 8% to 11% over the 3-year reporting period. This question was not asked in previous survey years and therefore there are no results prior to this reporting period.

Suicide is a response to a range of personal, community and societal factors (222). A small number of people will go on to die by suicide, which is tragic for all concerned. On review of Figure 13.2, suicide rates, whilst showing an undulating trend due to small numbers, have been below the Welsh average in recent years across Cardiff and the Vale of Glamorgan.

The content of this chapter was developed using existing literature, strategies and reports and triangulating findings with professional leads and engagement work (circa 100 PNA survey respondents; and four PNA focus group participants). It should be noted that the views of those engaged are not representative of all adults with mental health conditions in the population of Cardiff and the Vale of Glamorgan, but do provide rich information about their lived experiences.

What has changed since 2017?
Pre-COVID-19
The Welsh Government Strategy ‘Together for Mental Health’ (224), launched in 2012, has almost completed its 10-year term. The most recent Mental Health Delivery Plan will finish in 2022 (225). The key priorities include:

• Improving mental health and well-being and reducing inequalities
• Improving access to support for the emotional and mental well-being of children and
  young people
• Further improvements to crisis and out-of-hours provision for children, working age
  and older adults
• Improving the access, quality and range of psychological therapies for children,
  working age and older adults
• Improving access and quality of perinatal mental health services
• Improving quality and service transformation

Talk to Me 2’ (222), the Welsh Government’s strategy for suicide and self-harm prevention across Wales runs from 2015 to 2022. In South East Wales there has been a Regional Coordinator for Suicide and Self-harm prevention (covering Cardiff and Vale of Glamorgan; Gwent and Cwm Taf) in post since 2020. In Cardiff and Vale of Glamorgan our refreshed Suicide and Self-harm Prevention Strategy was launched in November 2021 (226). This multi-agency strategy and action plan, entitled: ‘The right support, at the right time, in the right way: working together to reduce suicide and self-harm’, outlined the following overarching goals:

Regionally, there have been several service developments over the last 5 years, in particular:

• A shift towards cluster and locality level working
• Cardiff and Vale Recovery College has been developed, running online courses for adults with mental health challenges, carers and for staff working in mental health
• St John’s Ambulance is now commissioned to transfer service users in crisis to hospital, therefore decreasing the waiting time for this to happen
• Mental health services are moving towards trauma-informed care in the services that they provide and develop

COVID-19
Lockdown restrictions
During the early phase of COVID-19 restrictions (by May 2020), 43% of UK Psychiatrists were already seeing an increase in urgent and emergency mental health referrals and a 45% decrease in routine appointments (227). The Office for National Statistics (228) noted that there was a higher proportion of people in Great Britain reporting to be depressed during June 2020 (19.2%) as compared to between July 2019 and March 2020 (9.7%). According to the Cardiff and Vale PNA focus group, some participants found the pandemic lockdown measures reassuring and they felt safer. However, some were anxious about the opening up of society and the increased risks of contracting the virus, leading to greater
isolation.

As the pandemic progressed, by June 2021, the majority (59%) of people surveyed in Wales (circa 600 respondents) stated that their mental health had stayed the same, as compared to earlier on in 2020 (229). In contrast 33% stated that their mental health was “a bit worse” or “much worse” (229). More recently (since the beginning of May 2021), there has been a downward trend in those people surveyed who worried “a lot” about their own mental health and well-being with this sustained at 20% or lower since then, see Figure 13.3 below (230).

Care and support provision
The findings from the Cardiff and Vale PNA focus group were mixed in terms of care and support for mental health during the pandemic. Some participants welcomed the move to online services and meetings and hoped that this would continue post-pandemic with hybrid services / meetings. Third sector organisations were referenced as trying innovative ways of linking in, with Sefyll (CAVAMH), Ty Canna and Grassroots mentioned as positive examples. Some participants felt more able to reflect: “Things slowed down and that was good, I had the time and space to work on myself”.

In contrast, others stated that services had become worse for them: “My Primary Mental Health Service got a lot worse” or “CMHT [community mental health team] services that were vital fell apart, CPN [community psychiatric nurse] and Consultant left without being replaced, with awful consequences for mental health.”

What are the care and support needs

Individual
Language and communication
According to ‘More than just words’ (231), mental health service users are a key group for services to be available in the Welsh language, and to receive the Welsh language offer. Unfortunately, there is little information on first language collected my mental health services. However, interpreters are provided on request when required.

Community
Timely access to services
An unpublished Mental Healthcare Needs Assessment, completed in August 2017 defined the care and support needs for working age adults in Cardiff and Vale of Glamorgan. A common theme was having timely access to support services, as there are frequently long waiting times for counselling and psychological therapy.

Treating physical and mental health conditions holistically
The unpublished Mental Healthcare Needs Assessment also references an English report that stated that 30% of the population have one or more long-term conditions; e.g. diabetes, arthritis, asthma, cardiovascular diseases, HIV/AIDs or certain cancers. It reported that at least 30% of all people with a long-term condition also have a mental health problem (232). This equates to around 9% of the adult population having both a long term physical health condition and a mental health condition, indicating a need to treat both holistically.

Wider determinants of health
Deprivation
Life satisfaction in Welsh adults varies between different communities. Based on Public Health Wales Observatory analysis, as at 2018 there was a 14% difference between the age standardised percentage of the most and least deprived fifths’ life satisfaction scores (233). Since 2013, there has been a consistent gap in life satisfaction between most and least deprived fifths communities in Wales, see Figure 13.4 (233).

Socio-economic disadvantage also impacts upon suicide rates. Men who are from the most disadvantaged backgrounds have the highest rates of suicide in Wales, according to a Samaritans report (234). In order to counter this trend in Wales, the men who were generally socially disconnected and struggling with feelings of suicidality, told the Samaritans that the key elements of a successful service for them included: the ability for men to make a contribution; a feeling of being included; and the opportunity to work towards common goals (234).

Education and employment
In the UK, the estimated cost of mental health in the workplace was almost £35 billion in 2016/17, according to the Centre for Mental Health (235). This was due to: sickness absence; reduced productivity at work; and replacing those who leave due to their mental health (235). This demonstrates that employers need to cultivate a healthy working environment, promote well-being in the workplace, and support those with mental health conditions and their return to the workplace (235). The Health Foundation report that having good mental health is important for employment prospects and that unemployment creates stress and adverse health consequences; therefore the relationship between employment and mental health is bi-directional (236). Across Cardiff and the Vale of Glamorgan the Out Of Work Peer Mentoring Programme is delivered by Platfform. They support people with a mental health or substance misuse problem to find their volunteering, training or employment opportunity goals, if they have been out of work for more than 12 months (aged over 25); or not in education, employment
or training (aged 16-24)

Housing
Housing affordability and subsequent housing
insecurity has a two-way relationship with mental
health: prior mental health conditions have an impact on housing outcomes; and housing affordability (and therefore housing conditions) predict health outcomes, including mental health outcomes (237). Both Cardiff and the Vale of Glamorgan local authorities have Housing Strategies that support people with mental health conditions (89) (213).

Local authorities in Wales have responsibility for assessing local needs regarding: housingrelated support, strategic planning and commissioning housing-related services (238). Housing support can take many forms via the local authority or commissioned third sector provision. Settings of support can include: shared and self-contained specialist housing; or temporary housing solutions such as hostels, shared properties or self-contained housing (213). Housing support was highly valued by PNA focus group participants: “Moving out of hostel to a flat has been challenging but overall positive with third sector services to support me.” Focus group participants felt that decent housing was “central to well-being.”
However, some people voiced that their housing situation was not meeting their mental health needs: “My accommodation is a massive negative for my mental health and wellbeing, I have huge issues with my housing provider.” In some instances people’s mental health was affecting their housing conditions: “where I am now is better than previous places but because I’m unwell I’m not dealing with maintenance issues.”

Across Wales, the Housing (Wales) Act 2014 ensures that clients will be treated as in priority need should they find themselves homeless or threatened with homelessness. This legislation states that: ”a person who is vulnerable as a result of old age, mental illness or handicap or physical disability or other special reason, or with whom such a person resides or might reasonably be expected to reside” can be considered in priority need for housing. In Cardiff, the pattern of homelessness is often associated with having multiple adverse childhood experiences, leading to mental health and substance misuse issues (239). The Cardiff Homelessness Strategy (239) states that Cardiff local authority aims to provide a
person-centred, trauma-informed approach with multi-agency support to clients to prevent the “revolving door” of homelessness. The Vale of Glamorgan Homelessness Prevention Strategy has a focus on people receiving mental health services and includes the development of a robust hospital discharge process including from mental health wards (239) (240). Between April 2015 and March 2018, there was a 214% increase in those in priority need due to having a mental illness or learning disability in Cardiff (239). In November 2019 (over a 2 week period) there were an estimated 92 rough sleepers in Cardiff
and 1 in the Vale of Glamorgan (241)

Unmet needs
Feedback from focus groups with mental health service users and carers, to Mental Health Clinical Board (Cardiff and Vale UHB) during 2018 and 2019, outlined the following areas for improvement:

• Involvement in service design
• Communication and information, for example
  regarding decisions, discharge matters, and interagency communication
• Timely access to services
• Post diagnostic support
• Consistency of care
• An easy route through services
• Follow up on discharge from hospital
• Help with drug and/or alcohol problems

The PNA focus group undertaken had 4 participants, and therefore may not be generalisable. There were two key themes, which also resonated with the Mental Clinical Board’s findings above:
Timely access to the right support at the right time Based on the Cardiff and Vale PNA focus group’s findings, some services were difficult to access due to lengthy waiting times. Examples given were: Advocacy Matters, Primary Mental Health Support Services and Psychological and Counselling services. Furthermore, Cognitive Behavioural Therapy, once provided by Cardiff Mind had ceased due to funding
withdrawal. Experiences in getting the right support at the right time were largely unmet needs, based on the focus group findings. It was clearly stated that preventative or timely early intervention could prevent difficulties spiralling into a crisis situation.

A mental health crisis response service The Cardiff and Vale PNA focus group participants thought that a mental health intervention when things are
beginning to go wrong, or when people are in crisis would be important and may avoid attendance at the Emergency Department.

These unmet needs findings were corroborated by CAVAMH’s report: ‘My Say’, which outlined that a significant proportion of people in Community Mental Health Teams (CMHTs) did not know who to contact in a crisis (242).
The key gaps in knowledge are:

• Knowing what the employment status and needs are for our population with mental health conditions
• Having meaningful outcome measures for our mental health service users
• The number of Welsh speakers known to services
• The effectiveness of specific interventions that have yet to be fully evaluated in
• Cardiff and the Vale of Glamorgan, for example, Recovery College
• The long term effect of COVID-19 on population mental health

What are the range and level of services needed?

Prevention and assets
Prevention
The PNA focus group had 4 participants which is therefore not representative of all people with mental health conditions, but such settings do enable a depth of insight, albeit on a small scale. Focus group participants thought that a number of services had the potential to help with future well-being and work in a preventative manner. These included, on a personal level, social support and friends. One to one support, psychological support and Community Psychiatric Nurses were seen as helpful, as was mentoring and peer support.

Third sector organisations such as Advocacy Support Cymru, Bi-Polar UK, Speakeasy (legal
advice and support), and Sefyll (CAVAMH) were identified to offer preventative input. Day
Support (such as that offered by Ty Canna and Mind in the Vale of Glamorgan) as well as
Cardiff and Vale Recovery College were helpful.

Assets
The PNA focus group considered many of the same organisations as assets to support their well-being, for example, one to one support, psychological support and Community Psychiatric Nurses were noted as helpful services for the individual. At a community level, friends and social networks, events (e.g. music, concerts), arts centres, cinema, peer support and clubs were considered supportive. Educational settings’ mentoring and support systems were seen as invaluable, and voluntary work to help others, as well day centres, such as Ty Canna – “offering “amazing” practical and social support” were well regarded. Third sector organisations offering mental health support were seen as positive for example, Sefyll (part of CAVAMH), Bi-Polar UK and CCAWs (Community Care and Wellbeing Service).

Advocacy was a real source of support for many –
Advocacy Support Cymru and Advocacy Matters
were two organisations highlighted as being
particularly helpful. Cardiff and Vale Recovery
College was thought important for one’s wellbeing and came highly recommended.
In addition, professional leads identified that
access to work initiatives provided support for
people with mental health conditions. Other
third sector assets include Mind in the Vale and Cardiff Mind. The need for sustainable funding of third sector organisations was identified.

Community
Maintaining independence
Maintaining a level of independence was a priority for PNA focus group participants: “Volunteering opportunities and getting involved in activities.”; “I need social support and I need social care support”; and “Befriending and peer support are vital.”

Timely access to services
Timely and consistent access to services was widely agreed as a priority for well-being in the future by focus group participants. Availability of psychological and counselling services was limited due to waiting times.

Partnership approach
Continuity of care
Continuity of care was deemed important by focus group participants. However, once in a service sometimes staff left or moved on, meaning that a consistent service was not always available.

What is likely to happen in the future National Survey for Wales’ data shows that historically those being treated for a mental illness has increased from 9% in 2009 to 13% in 2015, based on the Future Trends Report (243). This may be because numbers with a mental illness have increased; or that there is
increased awareness of mental illness, and therefore subsequent identification and treatment for this. In the future, projections show that there will be more people with a common mental disorder, as the population grows, see Table 13.1 below. This could lead to increased demand on services. It should be noted that these projections need to be treated with caution as many variables will affect an accurate future prediction.

In the future, it is likely that, across Cardiff and Vale of Glamorgan, cluster level working will become the norm for mental health services. In addition, the development of 111 services for people in a mental health crisis is likely in the forthcoming year (2022).

Recommendations
All agencies to:

• Develop data systems to address the gaps in our knowledge
• Monitor the evolving understanding of the impact of COVID-19 on mental health
• Support housing transition to avoid homelessness for mental health service users
  Cardiff and Vale UHB and Cardiff and Vale of Glamorgan Local Authorities to:
• Commission enhanced peer support services to promote independence
• Redesign mental health services so that waiting times decrease and there is easy
  access to mental health services when in a crisis
• Co-produce meaningful outcome measures with mental health service users
• Assess the effectiveness of novel interventions, for example in the Recovery College
• Third sector
• Promote independence and advocacy for people with mental health conditions

Cognitive Impairment Including Dementia

This chapter should be read in conjunction with the following chapters: Older People; Healthy Lifestyles and Long Term Conditions; Adult Unpaid Carers Recommendations
All agencies to:

• Increase service user and carer input into service developments and their own person centred care plans Ensure that individual needs are person-centred
• Tailor the needs of unpaid carers of people living with dementia so that they have appropriate respite
• Have clear care, coordinated pathways for people with a progressive diagnosis so individuals are not lost in the system
  Cardiff and the Vale of Glamorgan Local Authorities to:
  
• Develop the capacity of residential and nursing homes to accommodate the future needs of people living with dementia, both in terms of increased bed numbers and also dementia-friendly environments
• Support the needs of unpaid carers, who are often older people themselves, through the provision of information, advice and support
• In partnership with the third sector and Cardiff and Vale UHB, to further develop local communities to become dementia friendly
  Cardiff and Vale University Health Board and Primary Care to:
• Support further developments in Primary Care through training and development to ensure that both physical and mental health needs are met for people living with dementia.
• Provide a personalised care pathway for a person living with dementia and their carer so that people can link in with support as needed

Overview
According to the Royal College of Psychiatry, dementia is: “a group of conditions which affect memory” (244). The problems are mainly due to memory loss and thought processing; they also get worse with time (are progressive) and are not due to normal ageing (244).

In contrast, mild cognitive impairment (MCI) is a less serious memory problem, and does not affect everyday life in such a major way as dementia (244). The number of people on the general practice dementia register in Cardiff and the Vale of Glamorgan was 3,370 as at 30 September 2020 (245), which equates to 0.7% population prevalence. However, the estimated number with dementia aged over 65 in 2020 was 5,773 (94), which means that over 42% of people with dementia are not on the general practice
register as having a diagnosis. People with cognitive impairment are not recorded on a specific register within primary care. The needs of older people are discussed in chapter 8. The content of this chapter was developed using existing literature, strategies and reports and triangulating findings with professional leads and engagement work (seven PNA focus group participants). It should be noted that the views of those engaged are not representative of all adults with cognitive impairment/dementia in the population of Cardiff and the Vale of Glamorgan, but can provide rich information about their lived experiences.

What has changed since 2017?
Pre-COVID-19
Since 2017, there have been many developments nationally and locally for people living with dementia and their unpaid carers. At a Wales level, the national Dementia Action Plan for Wales (246) was launched in 2018, with a commitment of £10 million a year in funding for various initiatives nationally and locally. In May 2018, the Cardiff and Vale of Glamorgan Dementia Strategy was launched during dementia action week; this was based upon a dementia needs assessment, completed in 2017 with multiple stakeholder engagement across the region. The vision for the Dementia Strategy 2018-2028 was that:
“By 2028 the population of Cardiff and the Vale of Glamorgan will be dementia aware and will reduce their risk of dementia. People with dementia will have equitable and timely access to a diagnosis; they will have person-centred care delivered locally with kindness. Carers will feel supported and empowered.”

There were eight strategic objectives within the Cardiff and Vale of Glamorgan Dementia
Strategy:

Dementia is everyone’s business

• The risk of dementia will be reduced and there will be a timely diagnosis
• Access to services will be equitable
• Services will be fully coordinated
• Services will be delivered with kindness and compassion
• Support will be centred on Primary Care
• Carers will be for cared for
• Crises will be avoided

In 2021, the All Wales Dementia Care Pathway of Standards (247) were launched and Welsh Government also announced recurrent Memory Assessment Services funding for each Regional Partnership Board area. The aim of this was to increase dementia diagnosis rates across Wales. A variety of initiatives/pilots have been funded through this in order to meet this aim, and are currently being implemented with a view to full evaluation in 2022/23.

COVID-19
The COVID-19 pandemic has disproportionately impacted people living with dementia, and their unpaid carers, as outlined in this section.

Direct impacts
UK research suggests that delirium from COVID-19 can make it hard to identify COVID-19 in people living with dementia, which could impact their care (248). Internationally, people living with dementia frequently have other conditions, increasing the risk of complications from COVID-19 should they contract it (249). Further international research also found that people living with dementia had increased risk of infection; and should they contract COVID19: worse outcomes, adverse impact on cognition and were harder to isolate (250). In 2020, the most common pre-existing condition mentioned on death certificates amongst
those dying of COVID-19 (in England and Wales), was dementia and Alzheimer’s disease, at 18,420 deaths (251). This implies that people with dementia were disproportionately affected by the pandemic.

Lockdown restrictions
For people with young onset dementia, there was a mixed picture with some people reporting benefits, and some reporting disadvantages due to the COVID-19 restrictions, according to Young Dementia UK (252). They highlighted issues such as: lack of routine,
feeling forgotten, loneliness, isolation, confusion, feeling vulnerable, losing skills, not being
entitled to support, and loss of confidence (252). However, there were also many positive
aspects to the pandemic, with some saying they had learnt new skills, found the virtual
support beneficial, and some people felt less anxious as going out made them anxious
previously (252).

Lockdown restrictions
For people with young onset dementia, there was a mixed picture with some people reporting benefits, and some reporting disadvantages due to the COVID-19 restrictions, according to Young Dementia UK (252). They highlighted issues such as: lack of routine, feeling forgotten, loneliness, isolation, confusion, feeling vulnerable, losing skills, not being eentitled to support, and loss of confidence (252). However, there were also many positive aspects to the pandemic, with some saying they had learnt new skills, found the virtual support beneficial, and some people felt less anxious as going out made them anxious
previously (252).

Care and support provision
Mok et al (250) found that non-COVID related health care appointments were impacted, and that lack of social engagement and support may have resulted in a deterioration of the condition, with isolation also affecting psychological well-being. This experience was also reiterated in recent (October 2021) focus group(s): ‘’Services are greatly reduced or abandoned.’’ Referrals into Memory Team also dramatically reduced during 2020/21 to 1,028; a decrease from an average of 1,533 over the four preceding years.
The Social Care Institute for Excellence (253) highlighted the key issues that people with dementia living in care homes might have, for example: not understanding the need for isolation, finding personal protective equipment frightening and struggling with communication. A further report: ‘Safeguarding adults with dementia during the COVID-19 pandemic’ (254) raised concerns that people living with dementia might be more vulnerable to abuse or neglect during the pandemic. This may be due to: social isolation, stress on carers, overstretched care staff, increased scams, increased domestic abuse, and new staff, volunteers, or support (254).

What are the care and support needs?
Individual
Language and communication
According to ‘More than just words’ (231), people living with dementia are a key group for services to be made available in the Welsh language. The reason being is that people living with dementia may revert back to their first language as the illness progresses. Data are not routinely available on first language for people in Memory Team or Mental Health services; however an interpreter can be provided on request. ‘More than just words’ emphasises the importance of the active offer in the Welsh language (231), this may be particularly important if people are unable to request services in the language of their choice.

Community
Based on a Cardiff and Vale of Glamorgan dementia health needs assessment (255), completed in 2017, people living with dementia have a wide range of care and support needs. Their needs include, but are not limited to, the following key issues:

• Isolation and loneliness – with loneliness increasing cognitive decline
• Being treated with kindness and compassion
• Having services that are coordinated
• Caring for unpaid carers – the wellbeing of carers has a direct impact on their
  relationship with the person living with dementia
• Knowing what to do in a crisis – having the information available, and a timely
  service when in a crisis
• Moving care and support to Primary Care – this would require training and support
  so that Primary Care staff feel supported
• Inequality in access to services – a concern that without having relatives to advocate
  for the person living with dementia that their needs would not be met
• Dementia being everyone’s business – to include the development of dementia
  friendly communities and dementia friendly environments
• Prevention/risk reduction of getting dementia – this includes cardiovascular risk
  reduction: a major cause of both Alzheimer’s disease and vascular dementia.

Wider determinants of Health

Deprivation
The association between deprivation and having dementia is complex. Based on the findings of a Race Equality quality Foundation report (256), it can be summarised that the prevalence of dementia is higher in more affluent areas, but that the incidence and risk of getting dementia in the first place is higher in more deprived areas. The reasons for this are that a higher life expectancy is associated with affluence and as age is the biggest risk factor for dementia, then the prevalence will be higher in the older, more affluent age groups. In contrast the risk factors for dementia, such as: high blood pressure in mid-life,
cardiovascular disease and diabetes, are more common in people with lower socioeconomic status, and therefore, new cases are more likely in more deprived areas and populations (256).

There is an additional risk that those from lower socio-economic groups are more disadvantaged in being able to access services. Studies referenced in a UK report: ‘Dementia, Equity and Rights’ (256) identified that middle class populations were more successful at finding out about services, and that people with high education attainment were more likely to be referred to memory services. Home owners were four times more likely to be prescribed anti-dementia drugs than those in rental accommodation (256). The
majority of carers are unpaid, and families who receive a diagnosis of a family member can experience financial hardship as a result of possible reduction of income and additional costs of care (256).

Employment
People who have young onset dementia, are aged under 65, and therefore may be in employment due to being of working age. Dementia UK report that employers need to be aware of the signs and symptoms of young onset dementia; and if a diagnosis is made to ensure that reasonable adjustments are in place to support people in the workplace (257). Unpaid carers of people with young onset dementia also require flexible working arrangements to ensure that suitable support can be provided to the person with young onset dementia (257). Relatives who care for someone who has young onset dementia frequently have to leave their work, to support their loved one, creating further financial stress for the family (257).

Housing
The housing needs for people living with dementia range from being completely independent (at earlier stages), to having domiciliary care, to requiring a residential or nursing home placement for their own care and safety at the later stages of the dementia journey. Cardiff Older Person’s Housing Strategy 2019-2023 outlines the specific housing needs for people living with dementia (258). It outlines the importance of appropriate housing for promoting independence and decreasing the need for residential care; whilst also decreasing the pressure on health and social care services (258). As at 29 October 2021,
there were 489 residential home placements for Cardiff adults, of which 55 are with Mental Health Services for Older People (MHSOP) teams; there are a further 410 in nursing home placements, of which 77 are with MHSOP teams. MHSOP placements are highly likely to have dementia. These figures are for all adult service users and include all service users that Cardiff is paying for whether in or out of county. It is likely that the Dementia figures are higher than reported here.

Vale of Glamorgan’s Housing Strategy outlines the
anticipated increase in housing need for people
living with dementia, due to the ageing population (147). It states that in recent years there has been a significant increase in older people’s nursing home placements and elderly mentally infirm (EMI) placements (these are for people living with dementia). In the Vale of Glamorgan (as at 28 October 2021), there were 446 Nursing Home beds, and 286 Residential Home beds, of which 220 were for people with dementia. One care home had an additional 24 mental health beds

Environmental adaptations to make the home “dementia-friendly” can help to support people living with dementia with orientation and to feel settled; therefore promoting independence. For example, having symbols on doors to help navigate individuals to food cupboards or the shower, or having assistive technology (259).

Unmet needs
Focus groups arranged over a range of dates and times with 7 participants, using a hybrid methodology (specifically for people with living with dementia), identified the following unmet needs (based on small numbers of participants, so only indicative):

• Memory Clinic to follow up people readily after their initial diagnosis, as this was not
  currently happening.
• Respite for unpaid carers. This was the single most sought after need.
• Being able to see a GP. They felt that Covid-19 restrictions had meant a reduction in
  support that was readily available previously; in some cases they felt that the
  hospital Emergency Department was the only answer.
  

From the perspective of professionals, the key gaps in our knowledge are having meaningful outcome measures for service users.

What are the range and level of services needed?

Prevention and assets

Prevention
Based on the focus group results and previous needs assessment work, the key preventative areas for people living with dementia include:

• Using service users and carers in service development, so that care is personcentred
• Ensuring that support is centred on Primary Care
• Ensuring that unpaid carers have sufficient respite care
• Ensure people living with cognitive impairment or dementia have access to advocacy where there is nobody else to represent them.
  

Assets
PNA focus groups (specifically for people with living with dementia) outlined the following assets as supportive to their well-being:At the individual level, in general, some people do get the support they need and others do not. It is highly dependent on having the ability to look for help or having
someone who will look into support for you – this makes the provision inconsistent rather than tailored.

• Within the community, Forget Me Not Chorus was particularly mentioned as a source of support for people living with dementia. In particular face to face rehearsals were very much valued. The Dementia Café in Cathays Community Centre was also mentioned as a source of support during the COVID-19 pandemic.
• At a population level: some local authority services, Nexus (part of Cardiff and Vale Action for Mental Health (CAVAMH)) and Memory Clinic were most often mentioned as sources of support. In particular Nexus, for maintaining contact with as many older people as possible by telephone, email, online one to ones and meetings; and through CAVAMH, keeping Directions Handbook up to date and circulated

Community services
Through the focus group(s) work, it was apparent that the following would be important to meet the unmet needs of people living with dementia:

• Involvement of service users and carers
  in decision making and planning of
  ervices across the board to make the
  provision useful at point of service. This
  should start with ensuring the person
  living with cognitive impairment or
  dementia is in control of their own care, either themselves or through an advocate

• GP services providing easily accessible, personal care in a timely fashion. Primary mental health care from GPs, and a willingness to identify physical ailments not connected to mental health but that may cause mental health difficulties if not addressed promptly
• The ambulance service being able to provide timely, accessible person-centred care.
• Respite care for unpaid carers
• Providing services in accessible formats. Dependency on technology has been exaggerated by COVID-19 and this is a major barrier for many older people. IT training was not the solution for them

Professional leads identified that third sector organisations (including Marie Curie and CAVAMH) across Cardiff and Vale of Glamorgan have developed dementia friendly communities at both strategic and grassroots levels to ensure that services and settings embrace the needs for people living with dementia and their unpaid carers. This can mean developing dementia friendly environments, and training staff to be knowledgeable and empathetic towards people living with dementia.

Partnership approach
Dementia Friendly Cardiff and Dementia Friendly Vale are the result of partnerships between Cardiff and Vale UHB, the respective Local Authority, Alzheimer’s Society Cymru, and are supported by Marie Curie. Through the appointment of a Dementia Friendly Communities Coordinator for Cardiff and the Vale of Glamorgan, businesses and organisations are being supported to recognise the needs of people affected by dementia, and pledge their commitment to become more welcoming. With information and guidance
from the Coordinator, simple and meaningful action is being taken to improve staff awareness, create more accessible physical environments, and increase the availability of information about dementia. This means that people affected by dementia can feel supported to continue to visit their local businesses and remain connected to their community for as long as possible (260).

What is likely to happen in the future?
Increasing age is the biggest risk factor for dementia, and therefore as our population ages and increases in number, the numbers of people living with dementia will increase over time. It is anticipated that numbers of people living with dementia will increase more steeply in the Cardiff area, as compared to Vale of Glamorgan (94). See Table 14.1 for further details.

Recommendations

All agencies to:

• Increase service user and carer input into service developments and their own
  person centred care plans
• Ensure that individual needs are person-centred
• Tailor the needs of unpaid carers of people living with dementia so that they have
  appropriate respite
• Have clear care, coordinated pathways for people with a progressive diagnosis so
  individuals are not lost in the system
  
  Cardiff and the Vale of Glamorgan Local Authorities to:
• Develop the capacity of residential and nursing homes to accommodate the future needs of people living with dementia, both in terms of increased bed numbers and also dementia-friendly environments
• Support the needs of unpaid carers, who are often older people themselves, through the provision of information, advice and support
• In partnership with the third sector and Cardiff and Vale UHB, to further develop local communities to become dementia friendly
  Cardiff and Vale University Health Board and Primary Care to:
• Support further developments in Primary Care through training and development to ensure that both physical and mental health needs are met for people living with dementia.
• Provide a personalised care pathway for a person living with dementia and their
  carer so that people can link in with support as needed