Dementia strategy

The Covid-19 pandemic has affected people and families living with dementia, and so part of this strategy is about ‘reset and recovery’. We don’t know at the time of writing how long the pandemic will be with us, so we have to adapt and change, rather than just sit it out and wait. Memory Assessment Services, which diagnose dementia, were suspended for the Covid crisis, as were day centres and other opportunities for face-toface contact – memory cafés, day centres, carers groups, and visiting at home. People have missed timely diagnosis and the connection to support and advice. 

People in the later stages of dementia might not understand the need for social distancing, and people living in care homes are, at the time of writing, missing out on visits, tea and cake, and hugs with family and friends. There have been positive and creative responses to the restrictions – groups and cafés using the various online video applications, and services going back through their contacts to check in on people.

However, this strategy sets the direction for the next five years, building on what has been achieved since “Living Well With Dementia in Leeds” was published in 2013, and identifying what is still to be done. Most of this document was drafted before the Covid pandemic, and remains valid.

Above all, this strategy aims to offer hope, and to identify opportunities to improve the quality of life and support to live well with dementia. We all have our strengths and abilities, within ourselves and through our families, friends and support networks. A ‘strengths-based’ perspective is important for people with dementia to live as well as possible. At the same time, it is the case that dementia, as a progressive condition affecting the brain, causes loss and impairment of abilities which can, at times, feel overwhelming. Dementia can be extremely tough and challenging, affecting family and social life, finances, plans for retirement and much else besides.

This document looks forward, to describe the challenges and priorities for improving services. It is also an opportunity to show what has been achieved in the seven years since “Living Well With Dementia in Leeds – our strategy” was published in 2013.

During that time there has been excellent progress in Leeds to improvethe diagnosis of dementia, and support to help more people and carers to live with the condition. Our ‘dementia-friendly’ social movement has grown, to make people more aware, reduce the sense of stigma around the condition, and sign up local business and community groups. Thousands of local NHS staff have been trained, and specialist support for community services and care homes has been enhanced.

However, significant challenges remain. The capacity and quality of services, particularly for people with more complex needs, is inconsistent. There are still people and families who miss out on the support available and feel isolated. The population living with dementia will increase, and become more diverse.

The number of people with dementia in the UK population has probably stayed roughly the same over recent decades. The evidence for this is a comparison of population samples twenty years apart, by the Cognitive Function in Ageing Study. This is a positive public health story, often overlooked in reporting about dementia. However, as the generation born in the years after 1945 approaches age 75 and beyond, it is likely that there will be demographic growth during the 2020s. Health inequalities are important, with increased risk of dementia linked to higher prevalence of heart disease, type 2 diabetes and high blood pressure. This makes it important to find ways in which we all can reduce the risk of developing dementia - “what’s good for the heart, is good for the brain”.

The prevalence of dementia in England and Wales is expected to increase, according to population modelling. However, the increase is slower than would be expected purely from population ageing – the good news is that the risk of developing dementia at any given age is, in general, gradually decreasing. People are living longer with dementia, alongside other long-term health conditions and frailty. The published research indicates that the largest growth will be in the oldest age-groups; the numbers of people aged under 90 with dementia in England and Wales, according to this forecast, will decrease from 2030.

The level of dementia-related disability is likely to increase, which is to be expected as more people live with dementia to age 90 and above. Hospitals and care services report that there are more people needing help with complex needs. This document sets the course in Leeds for the next five years. 

The NHS has set out its long-term plan, including “supporting people to age well”; “fully integrated communitybased care”, and “improved support to care homes”. In Leeds we have real strengths in the sense of partnership and commitment, with people with dementia, families and carers, community groups, care providers, and many organisations beyond social care signed up to be ‘dementia friendly’. This strategy describes how that shared commitment will lead to better support people living with dementia in Leeds. 

Our recommendations will reduce the future prevalence of dementia in Leeds, and give everyone the best chance of a healthy later life.

Individually and together, we should:

• promote good health such as regular physical activity
  
• promote social contact, tackle loneliness, and treat depression
• look after our hearing
• make Leeds a safer place, road traffic incidents, assaults and falls are among the causes of brain injury
  
• educate our children well
• breathe cleaner air
  

Many of these factors are linked to preventing cancer and heart disease as well as dementia. They also depend on local action to reduce health inequalities.

Leeds is making change through the Best Council Plan and Health and Wellbeing Strategy.                 

For people living with dementia, starting with people means ‘don’t see dementia, see me’. ‘Better conversations’ means listening to people so we can offer person-centred care. When verbal ability is impaired, physical pain or emotional distress may be communicated through behaviour. ‘Think family’ means recognising the expertise and needs of carers.         

‘Home first’ means supporting people to stay well-orientated in familiar surroundings. As dementia progresses, this requires strengths-based values, skilled staff and effective teamwork. Support at home is more important to many people and families since the coronavirus crisis.          

Dementia is everybody’s business. People living with dementia are to be found in all groups, activities and services which support older people. This strategy seeks to include people with dementia as Leeds invests in primary, community and preventive services, and as work continues with care homes and hospitals to improve quality.                               

Leeds Dementia Partnership brings local organisations together as a team with the shared goal of improving life with dementia in Leeds. Even a diagnosis of dementia usually involves a person’s GP, a scan at a hospital clinic, and specialist NHS memory service. People with dementia are among those especially vulnerable when moving from one service to another, and rely on good information sharing between professionals.                                

Dementia friendly Leeds widens this local team work to involve local communities, organisations and businesses. People and families living with dementia are part of our friendly, healthy, compassionate city.                               

Leeds was one of six places to commit to the campaign for dementia friendly communities at its launch in 2012 at the Alzheimers Society conference. The campaign seeks to sign up organisations to local Dementia Action Alliances, and create individual Dementia Friends via awareness sessions and online. The national total of Dementia Friends passed 3 million during 2019.                                   

Dementia friendly communities are at the heart of improving lives, letting people know that they’re not alone, and still belong. People and organisations who are active in these local initiatives are true strengths and assets, making it easier to talk about dementia, to live life as fully as possible, and reduce the sense of stigma.

Achievements 2013 to 2020

• support and coordination of the campaign established with funding from Leeds City Council
• Up and Go involvement group established in 2016, for people living with dementia
• Leeds Dementia Action Alliance now has over 200 organisations signed up, including the emergency services, sport, culture, leisure and transport
• Leeds has achieved recognition as a dementia-friendly community, from the Alzheimers Society and British Standards Institute. Local initiatives at Horsforth and Morley have achieved recognition
• Dementia friendly Rothwell has led the way for local communities with the Tea Cosy Cafe, local shops, pubs, work with schools, and the first dementia friendly garden in a public park, working with Leeds City Council Parks and Gardens
  
• West Yorkshire Police, building on initial work at Rothwell, have established the Herbert Protocol for when people go missing, introduced dementia awareness for officers, and dedicated staff to act as contacts for concerns around dementia in districts and departments
• further dementia friendly community initiatives at Chapel Allerton, Otley, Roundhay, Wetherby, and the Elmet and Rothwell parliamentary constituency
  
• over 30,000 Dementia Friends in Leeds. Over 130 Leeds residents are Dementia Friends Champions and have run almost 2,000 awareness sessions
  
• Leeds Playhouse was awarded Best Dementia Friendly Project at the 2015 Alzheimers Society Awards. The Every Third Minute festival won a National Dementia Care Award in 2018, in the ‘Outstanding Arts and Creativity in Dementia Care’ category
  
• sporting reminiscence activities hosted monthly at Leeds United, Leeds Rugby, and Yorkshire County Cricket Club
• creative opportunities are embedded in the work of Leeds City Council Museums and Galleries, and Libraries
  
• Opera North presented a dementia-friendly performance of La Bohème in October 2019, and worked with local care homes to bring music to residents
• ten successful Dementia Information Roadshows in 2018-19 at community venues in each Community Committee area
• Leeds City Council Revenues and Benefits have worked in partnership with a person living with dementia and the Alzheimers Society, to improve access to Council Tax exemption / discount, and use friendlier language
• Leeds Libraries and 100% Digital Leeds supporting people to use devices, be online, and keep in touch, before and during the coronavirus crisis

Our approach to make a difference 2020 to 2025

• people living with dementia have chosen priorities for the dementia friendly Leeds campaign: transport, shops and businesses, and arts and recreation
• maintain a dementia friendly Leeds action plan, reporting quarterly to the Dementia Friendly Leeds Steering Group
• contact memory cafe organisers and local groups which haven’t met because of coronavirus to offer support to re-establish safe face to face or digital alternatives, and to identify people and carers who might have become disconnected from support
  
• explore and focus on opportunities to make a difference such as: influence the development of Leeds station as an age and dementia-friendly public space
• grow the Leeds Dementia Action Alliance, reaching a wider range of businesses and partners, recognising that recovery from the pandemic might limit opportunities
  
• when engaging with businesses, discuss how to help employees who are working carers
• seek more opportunities to work with schools and reach children and young people
• gather evidence of how dementia friendly actions have made a difference
  
• more dementia friendly initiatives in local communities, linked to age friendly and other campaigns for inclusion
• further public information initiatives, working with community partners, including an event with a BAME focus, and an event for people who are deaf or hearing impaired
  

For people living with dementia, it is a difficult decision to explore the possibility that something might be wrong. Dementia friendly communities and better public awareness will help, but will never entirely take away the fears associated with the condition. Reactions to diagnosis can be a complicated mix of feelings. Sometimes there is relief that there is an explanation for what has been happening; for many it is a very low point.

The diagnosis of dementia in Leeds has improved consistently over recent years, thanks to the efforts by all our NHS providers, and other local organisations, to raise awareness, identify signs and symptoms, make the diagnosis and support people to live with dementia. The chart below shows the progress made; by February 2020 the official estimate from NHS Digital is that Leeds had a diagnosis rate of 74.7% (actual number of people with a diagnosis, as a proportion of estimated prevalence).                                   

Diagnosis rates will never reach 100% of estimated prevalence. This is because people must be supported to seek diagnosis in a timely way, but not ambushed with it. For some frail older people approaching the end of life with other health conditions, it could be over diagnosis to explore mild symptoms of possible dementia – for example, there may be no benefit to going through the process.

Support after diagnosis

Most importantly, diagnosis is a gateway to support and an opportunity to offer people, families and carers a way ahead and come to terms with living with dementia. Although diagnosis rate is still the thing that NHS England use to measure local services, diagnosis is not by itself an achievement. It must connect to meaningful support to live with dementia.                                   

The approach in Leeds has been to create a support offer to everyone living with dementia. This has been achieved by investment in the Memory Support Worker service, and continuing to build community capacity. Post-diagnosis support no longer depends upon whether or not a person is prescribed medication. The use of well trained and skilled support workers has enabled clinical staff to be available in a more timely way, such as to reduce waiting times for diagnosis.                                   

Leeds is fortunate to have many dementia-friendly organisations and volunteers who have set up and run groups such as Memory Cafés. It is our ambition to ensure that support is available to all; to keep pace with emerging needs; and to keep people supported in our communities for as long as possible.                                   

Cognitive Stimulation Therapy (CST) is an approach to offering structured activity which is recommended in NICE guidance. It is offered post-diagnosis by specialist NHS services, and two local Neighbourhood Networks have established groups offering CST or activities informed by the approach. A further innovation is the use of a Circles of Support approach to keep people connected and active.                                   

Other post diagnosis support is described throughout this document, such as services for (unpaid, usually family) carers, opportunities for arts and creativity, social care.

The impact of coronavirus

However, the pandemic and suspension of memory assessment and diagnosis services has, not surprisingly, caused diagnosis rates to fall, both nationally and locally. The usual pattern in Leeds is that there are just over 1,000 people newly-diagnosed each year, whilst c. 1,000 people with a dementia diagnosis die each year. This leads to a modest net increase, as shown in the chart above. Most of the decrease shown below has been caused by the pause in diagnosis activity. In addition to this there have been excess deaths related to coronavirus. More people with dementia have died compared to what would normally be expected.                                    

Achievements 2013 to 2020

• Leeds achieved the national ambition for a 66.7% diagnosis rate at March 2015, and continued to improve from there to 74.7% at end Feb 2020, with 6,493 people recorded with a dementia diagnosis on Leeds GP registers
• Leeds Memory Service sees more than 90% of people within 8 weeks of referral; more than 65% have a diagnosis within 12 weeks of referral
• Leeds Memory Service has consistently retained its accreditation by the Royal College of Psychiatrists’ Memory Services National Accreditation Programme (MSNAP)
• the Memory Support Worker service started in October 2015, and supports 1,500 people every year
• 47 Memory Cafes and 13 singing groups, supporting all communities in Leeds

Our approach to make a difference 2020 to 2025

• reset and recovery of memory assessment and diagnosis, to support people who have missed out during the Covid crisis, and return to pre-Covid level of dementia diagnosis rate
  
• set out an accessible local offer for people with a dementia diagnosis, in leaflet and online form
• continue to raise awareness of signs and symptoms, and improve the diagnosis and support pathway, including further reduction in waiting times and developing the post-diagnosis support offer, including the offer of Cognitive Stimulation Therapy
• as people born in the years after 1945 reach the age of 75 and beyond, ensure capacity and diversity of provision keeps pace with demand, and supports people for as long as possible
• innovation and development in community support, to keep people well for longer, and support people further into the progress of dementia, where this is a safe and positive option

Dementia, frailty and mental health

The NHS Long Term Plan considers dementia as a long-term condition linked to frailty and healthy ageing, often occurring with other long-term conditions more prevalent in later life. Traditionally, dementia has been ‘badged’ as a mental health condition, affecting cognition, mood and behaviour. Specialist services and professional expertise has developed within old age psychiatry and other specialist clinical roles linked to older people’s mental health.                                    

The Leeds strategy, going back to 2013, has sought to achieve the best of both: a whole person approach to supporting people to live with dementia alongside other health conditions; and with timely access to specialist input when needed. The focus of support is primary care (GP practices) and community services (NHS, social care and community groups). The Memory Support Workers help people to navigate the system and join up services.                                    

Healthy ageing and reducing the risk

A healthy ageing approach includes reducing the risk of developing dementia and other conditions. The risk factors and opportunities to prevent dementia are described in the earlier section on the Leeds Health and Care Plan. There are two further points:                                   

• the NHS Health check, offered to everyone aged 40-74, is an opportunity to discuss lifestyle choices, support available to make positive change, and the risks of heart disease, cancer and other conditions as well as dementia
• people must not be blamed for, or further stigma attached to, dementia. We can do our best to improve our chances, but to develop dementia is to be unlucky

Frailty and population health management

Leeds City Council and local NHS organisations have adopted the approach of ‘Population Health Management’. This considers ‘cohorts’ of people at different stages of the life-course and different health needs. Local NHS data indicates that there are some 32,000 people who live with moderate to severe frailty, and/or are near to the end of life; of whom more than 4,000 have a diagnosis of dementia.                                    

Frailty refers to a reduction in our resilience and ability to cope with illness and adverse events. It means it might take only a small change to cause a crisis. For example, people with dementia are particularly susceptible to episodes of acute delirium, which may be perceived as dementia getting worse, and it is important to prevent when possible, and offer opportunities for recovery. The Leeds frailty programme seeks to improve resilience and prevent crisis as far as possible, and for urgent care services to respond in a timely way when necessary.                                   

Annual review and support planning

GP practices are funded to do annual reviews with people living with dementia, and with a range of long term conditions. This review is an important opportunity to ‘check in’ with people, to see if a person’s dementia has progressed, whether carers are struggling, and whether more support is needed. This is especially the case for people who didn’t feel the need for support straight away after diagnosis, and might be lost to services without a regular check in. Improving the quality and consistency of reviewing is a high priority for this strategy, and NHS investment in healthy ageing and frailty is a real opportunity to achieve this.                                   

Public Health in Leeds has worked with GP practices to develop Collaborative Care and Support Planning (CCSP) with people with long-term conditions. This approach is based on better conversations about living with health conditions. The conversation is focused on goals that people would like to achieve, and agreeing actions to achieve them. The idea is to have one conversation about the person, rather than separate conversations about different diseases. Dementia is included in this approach; we know that 2,800 people with a dementia diagnosis had a CCSP review in the 12 months to September 2019. Work is in progress to understand to what extent the reviews recorded goals related to dementia.                                    

Care coordination and teamwork

Finally, the NHS Long-Term Plan envisages that “Expanded neighbourhood teams will comprise a range of staff such as GPs…, pharmacists, district nurses, community geriatricians, dementia workers….”.                                    

In Leeds, we can claim to have already achieved the integration of Memory Support Workers into neighbourhood teams alongside clinical staff. There will be further opportunities arising from NHS England investment in care coordination and social prescribing.                                   

Achievements 2013 to 2020

• identifying health inequalities, linked to heart disease and Type 2 diabetes, as risk factors for developing dementia
• dementia is included in the “One You” campaign
• memory Support Workers are established as part of Leeds Neighbourhood Teams, older people’s mental health services, and linked to GP practices
  
• Leeds Community Healthcare Dementia, Depression & Delirium pathway
  
• a holistic approach to living with dementia, other long term conditions and frailty

Our approach to make a difference 2020 to 2025

• reduce the risk of dementia: One You Leeds, take-up of the NHS Healthcheck, diabetes prevention programme
• improve quality and consistency of the annual dementia review
• explore innovative approaches such as using community venues for review, a six-month review after diagnosis
• ensure there is access to support in the months and years after diagnosis, for people who don’t take up services immediately post-diagnosis
• more opportunities and support to plan ahead for the later stages of dementia
• taking the opportunities offered by the further development of social prescribing, and introduction of care coordinator roles

Carers are living with dementia too

A local carer, speaking at a Dementia Information Roadshow event in 2019, used a revealing phrase when telling her and her husband’s story: "When we got our diagnosis".

Living with dementia applies to families, friends and carers as well as the person experiencing the condition itself. Research indicates that:                                    

• 85% of people with dementia are supported by an unpaid carer. For Leeds this is an estimated 7,400 carers
• 34% of carers of people with dementia are economically active, so Leeds has c. 2,500 carers of people with dementia who combine unpaid caring with paid work

The impact of caring

Most people with dementia live at home (c. 25-35% live in care homes), and even when dementia becomes severe, an estimated 50% of people live at home. Perhaps 1,000 carers in Leeds are supporting people with the effects of the later stages of the condition: for example psychological distress, disturbed sleep pattern, continence care, support to stay safe. As well as the physical demands of caring, there is the emotional impact of seeing someone close to you change as the condition progresses, and perhaps the gradual sense of loss.                                   

Carers may struggle to put their own needs first, and even to articulate one’s own needs when in the habit of speaking for the person with the condition. Carers want to know that other care arrangements are available, whether in an emergency, or for a planned appointment, for holidays, for a hospital stay and, as carers said in the course of consultation on this strategy.

Coronavirus, families and carers

The pandemic has had a huge impact on carers and support services for carers. Carers have been faced with many different challenges, such as:

• being unable to visit the person they care for, or restricted in visiting, particularly if the person lives in a care home
• coping without services that offer a break from caring - such as day centres, community groups
• having to make tough decisions about what to do for the best - such as helping with personal care when it was difficult to source gloves, masks and other protective equipment (PPE)
• coping when the person with dementia doesn’t understand the need for social distancing
• coping with bereavement when they were unable to say goodbye in person

Carers Leeds and other services have adapted by offering telephone support, and running carers groups on Zoom. As services started to open again, this may cause difficulties readjusting, and making decisions about vulnerability to coronavirus.                                   

What sustains caring and makes it a satisfying role

When carers are able to stay positive about life with dementia, it is often because:

• there are opportunities to do things together, and to feel that the original relationship with the person is still there
• when the carer’s expertise and views are respected by professionals
• when there are opportunities to learn about dementia and share experiences with others
• when there are opportunities to take a break and have even a couple of hours a week to choose how to spend the time
• when there is support from services which offer good quality, person-centred care. This can lessen feelings of guilt about sharing the care with others
• when the carer can develop coping strategies to be more patient, and accept the changes that come with dementia
• finding ways to get a good night’s sleep

Achievements 2013 to 2020

• a Dementia Carer Hub at Carers Leeds, with over 1,000 carers supported per year. Services include: 1 to 1 support offer for carers, hospital based support at St James, information and education sessions for carers and carers' support groups
  
• working carers initiative with large local employers
• Leeds hospitals signed up to John’s Campaign, so carers can support people with dementia beyond usual visiting hours
• recruiting carers to join Leeds Dementia Partnership

Our approach to make a difference 2020 to 2025

• the Leeds Carers Partnership Strategy: Putting carers at the heart of everything we do
• identify carers, especially in primary care (GP practices)
• strengthening and listening to the voice of carers
• reach more carers of people with dementia with a positive offer of support, and reduce the isolation experienced by carers
• once carers have been identified and supported by services, keep in touch. Dementia is a progressive condition and carers are likely to need more help as time goes on
• improving capacity and choice for carer breaks
• offer support and substitute care which enables carers to prioritise their own health and wellbeing

Prevalence and people’s needs

There are around 200 people in Leeds who are aged under 65 with a dementia diagnosis. The overall prevalence of younger-onset dementia is hard to estimate, but there may be a further 100-200 people without a diagnosis. Younger people with dementia have specific needs which reflect the medical and social circumstances of developing the condition at this time of life.                                    

The provision of specialist services is supported by the National Institute for Health and Clinical Excellence (NICE) guideline on dementia. The need for such services requires a holistic view of family, social and clinical aspects, rather than whether a person has reached the age of 65.                                    

Younger onset dementias show a higher prevalence of rarer types, such as frontal-temporal dementia and post-cortical atrophy. There is generally a wider range of symptoms such as behavioural disinhibition and personality changes. The diagnosis of dementia can be more complex at a younger age, with a combination of factors – such as stigma, medical complexity – leading to longer diagnosis processes and a lower diagnosis rate for this population. Very rare types of dementia may occur when brain cells are affected in the progression of neurological conditions such as Huntington’s Disease.                                    

Socially, people may be at a particular stage of family life and career or employment, and there may be particular impact on social networks. Younger-onset dementia is more likely to have financial consequences, sometimes very severe, arising from such as loss of employment and income (for the carer as well as the person with dementia) and affect long anticipated plans for retirement. People may have young grandchildren and important family roles with childcare, or their own children may still be financially dependent, such as in higher education or even younger (Office of National Statistics data shows that the average age of parents is increasing). People with younger onset dementia often have parents who are ageing, perhaps with care and support needs of their own.                                    

Dementia and people with a learning disability

The onset of dementia tends to be younger for people with a learning disability, particularly Downs Syndrome, in which the risk of developing with dementia at any given age is approximately the same as for a person thirty years older without the syndrome. In Leeds, NHS community learning disability services manage a specialist diagnosis pathway. The culture and practice of person-centred care is of long standing in services for people with learning disability, and may help providers of care and support to adapt to dementia care. However, when a person with a learning disability has lived into adulthood with parents in the caring role, Carers Leeds report that the development of dementia can present new difficulties, and sometimes affect both generations in the family.                                   

Services for younger people with dementia and carers

There have been improvements to services in the past three years. However, carers of younger people with dementia report that residential care services may involve the person being placed in an environment with people much older, and that people often have to go to care homes outside Leeds. required for both carer breaks and longer term care, and there is potential for providers to meet demand more locally, with carers reporting that this would be preferable to placements outside Leeds.                                   

Achievements 2013 to 2020

• Young Dementia Leeds provides day services for younger people with dementia at a day centre and at home
• the service has moved to new premises with a new provider (Community Links), and are offering more choices of activity, working with partners to offer, such as creative arts and cookery. A Memory Cafe has been added to the service offer
• Carers Leeds are part of Young Dementia Leeds and offer dedicated support and a group for carers of younger people with dementia. This has extended support to many carers who don’t use the day services
• younger people with dementia team (NHS specialists) delivered Target training session to GPs, leading to increase in number of people with a diagnosis in 2019

Our approach to make a difference 2020 to 2025

• involve the Mindful Employers network, and other local employers, to increase access to reasonable adjustments for people who develop dementia whist in paid employment
• work with care home and supported housing providers to develop provision in the Leeds area
• work with the new carers group who are committed to campaigning and improving services
• for people with a learning disability who develop dementia, to improve access to diagnosis and understand specific support needs, such as for older parent carers

Diversity has many aspects, and for people living with dementia it is important that person-centred care is informed by an understanding of social and cultural factors, alongside personal history.                                   

Most people with dementia are aged 80 and over, and the condition is more common in affluent areas where people live longer. These tend to be more rural areas, where than can be difficulties accessing services. Some villages have well established Memory Cafes, whereas people in some places have to travel to access services. However, the agerelated risk of developing dementia is higher for people at a disadvantage from health and social inequalities. This means that the geographical spread of people living with dementia is more even - between inner city, suburban and rural areas - than might be expected from the age profile alone.                                   

There are people from the many different and diverse Black, Asian and Minority Ethnic (BAME) communities in Leeds who have experienced old age and increasing risk of dementia for several decades (for example, older people who identify as Irish, Jewish and other European origins) and the past one or two decades (for example, many older people of south Asian and Caribbean origins). South Asian and Caribbean populations in particular have a 4-5 times higher risk of developing Type 2 diabetes, which in turn is linked to increased risk of dementia. Dementia can take away the ability to speak English for people who learned it as a second language. Reported experience is that people from south Asian communities are looking to use eg. residential short stays for carer breaks and the language capability of services is a difficulty. Local organisations have worked with GP practices to support assessment of memory and cognition in the diagnosis process.                                   

More women have dementia than men, because women are more likely to live beyond age 80, men are marginally more likely to have younger onset dementia. There is evidence that unpaid caring is more likely to affect women, in the caring tasks carried out, and at a younger age.                                   

Lesbian, gay, bisexual and transgender older people have grown into adulthood and later life at a time of changing social attitudes and inclusiveness, and both developing dementia and coming into contact with care services can lead to difficulties and uncertainties. Alzheimer’s Disease in particular can take away recent memories and lead to a sense of the past being the current reality, which can be distressing for the person and loved ones to such as be back in a time when sexuality or gender identity was more often concealed.                                    

People need, and are entitled to expect, mainstream services to work well and be competent with diverse needs, such as Memory Services, hospital care. However, specific services are often valued, such as support to overcome barriers to access, memory cafes where mother tongue language is used & understood; groups for older LGBT people.                                   

Dementia is itself a disabling condition and important rights are conferred under equalities legislation and the legal framework for mental capacity. These cover access to services, social inclusion, and decision-making. Dementia friendly approaches have had considerable success to improve understanding of the condition and acceptance of people living with dementia. A rights based approach will complement and strengthen inclusion and quality of services.                                   

Achievements 2013 to 2020

• memory cafes and groups supporting local Caribbean, Irish, Jewish, south Asian people with dementia and carers
• in 2018, Touchstone BAME Dementia Service in Leeds won the Championing Diversity category at the Alzheimer's Society awards. This service is commissioning by the NHS in Leeds
• establishment of BAME Dementia Forum
• dementia awareness promoted via Dementia Friends Champions in community organisations
• a BAME dementia event in 2015, leading to a grants process and new service developments
• Memory Clinics established in 7 GP practices to reduce travelling distances. People in the Wetherby area can attend Memory Clinic hosted at Crossley Street Surgery, rather than travel to Knaresborough
• the number of people from BAME communities in Leeds with a dementia diagnosis, matches the expected number in proportion to the BAME population aged 65+

Our approach to make a difference 2020 to 2025

• a rights-based approach, to complement dementia-friendly initiatives and person-centred care, ensuring rights are upheld at key decision when decisions are made
• obtain funding and commission research into the experience of people with dementia and carers of diverse BAME origins in Leeds
• improve access to Memory Cafes and other groups in rural areas
• dementia awareness and addressing barriers to seeking support with older LGBT people
• develop care and support services with language and cultural competence

A strengthsbased approach to social care offers supportive conversations to connect people to a range of resources and groups; respond effectively at times of crisis; and plan for the longer term. It seeks to avoid the often undignified and diminishing experience of the gift and entitlement model, of being assessed to see if eligibility criteria are met. Hand in hand with this approach is asset-based community development, building on the strengths of communities to offer opportunities for people to live well and to be active and involved.                                    

The ambition for people in Leeds to live well with dementia, and to benefit from person centred care, fits very well with these approaches. This continues to be the right approach as dementia progresses to its later stages, when it becomes all the more important to: understand what approaches work to communicate with a person and promote emotional well-being; support family carers, who are a huge resource for many people in the later stages of dementia; enable community groups to access the right help to continue meeting people’s needs.                                   

‘Positive risk management’ means taking a person-centred approach to why a person might be behaving in certain ways and presenting risks, and looking at creative ways to reduce and monitor risks; and balance different risks, preferences and rights. Interventions such as residential care resolve many concerns, but can create other risks related to eg. the loss of a sense of belonging, or understanding why strangers are in one’s living space.                                    

The care of older people has traditionally focussed more on personal care, meals and routine daily living, and less so on social activity and access to the community. For people with dementia, involvement and meaningful occupation are beneficial and can be crucial to maximise brain function and individual ability.                                    

Direct Payments and other kinds of personal budget can offer person-centred solutions, acknowledging that people and carers living with dementia nearly always need additional support to co-design and manage the care arrangements.                                   

Achievements 2013 to 2020

• a team of three Dementia and Mental Health Liaison Practitioners has been established, offering specialist support and co-working with NHS colleagues and social workers in Neighbourhood Teams
• recovery approaches have been promoted in contracts for Community Care Beds, and introduction of short-term additional funding for people to leave hospital or avoid admission
• dementia friendly approaches have strengthened community networks and assets, such as an increase in memory cafes
• Memory Support Workers and Dementia Carer Support Workers offer conversations which listen to people’s concerns and connect people to community groups and activities

Our approach to make a difference 2020 to 2025

• explore and take opportunities to include dementia in work on better conversations, strengths based social work and asset-based community development
• train staff in support planning with people living with dementia

Digital innovation

Good design can involve small things that make a big difference to the ability of people to live well and independently – for example, signage which reminds a person where the toilet is. Technology has huge potential for everything from peer support, monitoring for personal safety, reminders and prompts, meaningful activity and even care & companionship. It is important that digital technology is used in an enabling way that offers less restrictive options to support living well and personal safety. Bringing together the expertise of people with dementia and carers, with design and technical expertise will co-produce useful innovation. It is likely that the most useful solutions will be those adaptable for each individual.                                   

Leeds Libraries were awarded a small grant by the Widening Digital Participation programme in 2019, to explore with people and families living with dementia how digital technologies could improve quality of life. Little did they know at the time how positive and practical the work would turn out to be as preparation for social distancing, with people and services needing alternative ways to meet and talk.                                   

Housing Options

People living with dementia and carers are ready to consider moving in the earlier stages of dementia, and extra care or supported housing is seen as a positive option. This was the consensus at a conversation about this strategy during 2019, at the Leeds Up and Go group for people living with dementia. Spouses and partners in the caring role do worry about what would happen if they were to need to go into hospital, or were to be the first to go. Extra care housing offers reassurance that alternative care arrangements would be there in a crisis.

People value connections with where they live, and this supports the Leeds approach of planning extra-care development to local geography. Concern was expressed that, as dementia progresses, extra care housing should continue to support people as a home for life, and that further moves to care homes are kept to an absolute minimum.                                   

Design for health & care environments

The independent sector tends to use standard designs for care homes, and recent experience suggest that opportunities have been missed to apply best practice to new developments. One option, suggested by developments in Liverpool, is that the local authority can design and build new specialist accommodation, even if it does not directly provide the care.                                   

The specialist inpatient accommodation at The Mount has been improved as far as possible with redecoration and improved lighting, but there are limitations arising from adapting traditional mental health wards for dementia care. Longer term, Leeds has the ambition to offer purpose-built accommodation using best-practice dementia care design.                                   

Achievements 2013 to 2020

• dementia friendly design has been implemented as wards have been redecorated at Leeds Teaching Hospitals
• dementia specialist wards at The Mount have had environmental improvements
• successful widening digital participation project by Leeds Libraries and 100% Digital Leeds, to improve understanding of how digital developments can support living with dementia
• smart house at Assisted Living Leeds includes options to enable people to live at home with dementia
• accommodation and care for people with dementia is included in extra-care housing developments

Our approach to make a difference 2020 to 2025

• applying best design principles to dementia care environments – housing, care homes and hospitals
• improve choices and outcomes for housing with care for people with dementia
• co design: so that physical environments and digital solutions are informed by real life experiences, and investment is directed by what people need

Good things come from taking part in creative activity – feeling calm, making connections, opportunities to take the lead, self-expression, lifting the mood. Some people with dementia report that they feel less inhibited at trying new and different things than they might have before developing the condition. People living with dementia have chosen arts and recreation as one of our top three priorities for dementia-friendly Leeds.                                   

There are excellent local examples of arts organisations, creative artists and community groups working together, and the challenge for Leeds is to extend these opportunities to more people, especially people in the later stages of dementia, and move from successful ‘one-off’ projects to sustained provision, including empowering carers and care staff to learn creative ways of communicating and working with people.                                   

Yorkshire Dance have brought music and joy to people in care homes with In Mature Company and used dementia care mapping as an evaluation technique to show how the sessions improve mood and interactions during and after the sessions.                                   

Achievements 2013 to 2020

• arange of creative opportunities established by the Leeds Living With Dementia Peer Support Service working with Leeds Playhouse, Leeds Museums and Galleries, and other partners
• many one-off creative projects carried out by third sector partners with local artists – including a mosaic project at Leeds City Museum, Pavilion Arts work with Touchstone and Leeds Irish Health and Homes
• fifteen singing groups for people with dementia in Leeds
• people in two local groups have produced banners, working with artist Ian Beesley and poet Ian McMillan, as part of a national project
• Leeds Playhouse staged the award winning Every Third Minute festival, curated by people living with dementia
• dementia friendly performances pioneered at Leeds Playhouse, and adopted by Opera North
• Leeds Playhouse has produced a guide to dementia friendly performances to provide best practice advice based on its award-winning performance model
• In Mature Company, a Yorkshire Dance Project to work in local care homes, 2018-21

Our approach to make a difference 2020 to 2025

• creative arts for living well - explore and take opportunities offered by developments in social prescribing
• to offer music, art and creativity for people experiencing psychological distress in the more advanced stages of dementia, to improve well-being and enable less restrictive care
• work with the care sector to offer creative opportunities for people in care homes and day centres, including training for artists to engage with people with dementia. Build on the success of one-off projects to develop a sustained approach
• work with the Leeds Arts and Health Network, including our universities, to evaluate creative initiatives and develop evidence for investment

There are three important steps to enable people to take part in dementia research:                                   

• awareness of opportunities and how to get involved
• obtaining informed consent, which is built into the ethics of research studies
• the practicalities of taking part - local researchers consult with people living with dementia to design research studies

Involvement in research not only contributes to progress in treatment and care, it enables people to feel more hopeful and useful. Leeds and York NHS Partnership Foundation Trust have produced a video with people explaining why they’re involved in research.                                   

Leeds has real opportunities to increase involvement, with three universities, three NHS Trusts and the Leeds GP Federation.                                   

Achievements 2013 to 2020

• when diagnosed, people in Leeds are routinely offered information about dementia research. 1.5% of people with a dementia diagnosis in Leeds have signed up, but this is too low, although it compares to a national average of 1% (data from October 2019)
• 1,167 people have participated in 46 studies in the field of dementia and neurodegeneration in Leeds NHS Trusts (data from October 2019)
• Leeds Beckett University has opened its Centre for Dementia Research, and has a lead role in important research areas. The What Works study for dementia education and training was funded by Health Education England
• University of Leeds has developed the SIDECAR tool for measuring wellbeing of carers of people with dementia
• local NHS Trusts and universities are engaged in a range of research collaborations

Our approach to make a difference 2020 to 2025

• increase the numbers of people, with and without dementia, in Leeds who are signed up to Join Dementia Research, promote and encourage throughout the care and support sector
• ensure staff to signpost people to research opportunities, using the LEARN tool

A national concern

The Alzheimer’s Society’s Fix Dementia Care campaign shares examples of poor experiences of care services, and identifies national concerns including the expense to families of self-funding and topping up care; shortage of government funding, variable care quality and lack of staff training.                                    

Care home quality in Leeds

There have been significant improvements to the quality of care homes in Leeds in recent years, as judged by the Care Quality Commission (CQC). However, for people and families seeking specialist dementia care, it is more difficult to find a care home rated ‘Good’ or better by the CQC. The council’s Care Quality Team has been established to work with the local care sector, and has adopted dementia care as a priority.                                    

Workforce, training and investing in quality

Good quality dementia care depends upon recruiting, training and retaining the right staff in sufficient numbers. This is especially a challenge in the social care sector, where pay is low, there are limited opportunities for promotion and career development, and high staff turnover. The relative success of the Leeds economy in retail and other areas means that there are alternatives on offer which can seem more attractive than working in social care.                                    

There is a particular connection to the Leeds ‘Inclusive Growth Strategy’ and its ambition to create better jobs and tackle low pay. The ‘Step Into Care’ programme works to promote careers in social care, and support both young people, and middle-aged / older workers, into the workforce. Boosting the pay and conditions of a largely private sector workforce is likely to require increased funding via contracts. This is a cost against local authority budgets, whilst also being an investment in the Leeds economy. Good quality care helps unpaid carers and family members to remain in paid work. When low-paid workers are better rewarded, this has a knock-on effect in stimulating the local economy. However, in the context of local government funding, especially with the additional spending and loss of income from the Covid pandemic, this remains a real challenge.                                   

Support at home - developing the Leeds offer

Domiciliary care is a vital service to support people at home, including in the later stages of dementia (50% of people with severe dementia live at home). People require a flexible approach to care delivery, which is able to adapt to how they are on a given day, and what help they need. Staff require the skills to build relationships and trust, and find creative ways to help people who might not be fully aware of, or acknowledge, support needs. Consistency of staff is especially valued, because of the importance of a good relationship and understanding.                                   

The approach of ‘do with’ rather than ‘do to’ is best practice for everyone who has care and support needs, and especially so for people living with dementia, who may be able to physically do tasks with a little prompting, and may react defensively (as anyone would) to having personal care carried out without consent and co-operation being achieved.                                   

Support at home is likely to be a more favoured option for families during, and perhaps after, the pandemic. Restrictions on care home visiting, and concerns about outbreaks, seems to be a factor for families to ‘go the extra mile’ to keep caring for people at home in the more advanced stages of dementia. This is an opportunity to articulate clearly what the Leeds support offer looks like, to promote the good services we have and to understand what improvements people and families need.                                    

Day centres are a positive option for many people living with dementia and carers, offering social experience and meaningful occupation for people attending; and for carers, a break, or even vital support to stay in employment.                                    

NHS services

Access to specialist NHS services is an important aspect of good quality care. People with dementia who receive social care need a multi-disciplinary approach with good working relationships, and timely access to expert colleagues who can advise and cowork when required. The reintroduction of specialist older people’s services, from March 2019, by Leeds and York Partnership NHS Foundation Trust (LYPFT) was a significant step forward. People living at home, and in care homes, can benefit from both care co-ordination and intensive interventions.                                    

Leeds Teaching Hospitals Trust (LTHT) has a long-established Dementia Steering Group, which co-ordinates across clinical areas and support services on eg. staff training, improvements to ward environments, food choices and menus, ensuring that glasses, hearing aids and dentures are properly used. People with dementia are vulnerable to being disoriented in hospital, and upon leaving hospital; and to episodes of delirium linked to acute illness. This is considered further in the next section.                                   

Leeds Community Healthcare and Leeds Teaching Hospitals have both developed dementia training for staff, and made it part of the ‘statutory and mandatory’ training at the appropriate level for each staff role. Leeds Community Healthcare have developed a dementia, delirium and depression pathway, which was launched in 2019, and offers staff guidance and support on best practice in treatment and care.                                   

Achievements 2013 to 2020

• LYPFT service redesign has introduced specialist older people’s teams (March 2019), to work more closely with Neighbourhood Teams to support the older population living with dementia, mental health needs and frailty
• over 6,000 staff trained in dementia care by Leeds Teaching Hospitals, including ward clerks, housekeepers and porters as well as nursing staff; improvements to ward environments, introduction of Know Who I Am document, dementia-friendly food choices and menus
• 370 Leeds Community Healthcare clinical staff Tier 2 trained; 1,200 staff trained at Tier 1 (March 2019 data)
• an improved training offer from the council for care providers and social work staff, including leadership in dementia care
• the council has established a Care Quality Team which is prioritising work with care homes to better support people with dementia

Our approach to make a difference 2020 to 2025

• be honest and open about the concerns regarding care quality, and make best use of all our procurement, contract management, care quality and training initiatives to achieve service improvement
• acknowledge the costs of good dementia care, and seek affordable ways to work with providers to match funding to care costs

Complex needs in dementia refers to:                                   

• people who experience emotional and psychological distress and associated behavioural needs
• people with multiple health conditions and needs, with dementia having a significant impact on how needs are understood and met

Sometimes distress and behaviour is a short term response, such as how a person is being treated, or finding oneself in an unfamiliar place or confusing environment. Small changes in approach, and thinking creatively, can make a big difference. It is always important to seek to understand from a person-centred perspective. It is usually unhelpful to label a person as having complex needs without trying to understand the person and possible reasons for being distressed.                                    

The frailty perspective is especially important when considering complex needs. Frailty leaves us vulnerable to dramatic, sudden changes in health triggered by seemingly small events such as a minor infection or a change in medication or environment. The more severe the dementia, generally the more likely it is that more complex needs will emerge, sometimes suddenly, in response to physical and psychological triggers. Hence an approach based on recovery is important, to discover for each person what might settle over time with appropriate treatment and care, and what is more severe and enduring.                                   

People with severe dementia are an estimated 12% of the population with dementia; and people with behavioural needs linked to emotional distress (such as agitation and irritability are 5-16% more prevalent among people with dementia). Combined with the data below on prescription of anti-psychotic medication, it is estimated that there are 500 - 1,000 people in Leeds with more complex needs in dementia.                                    

Care homes are understandably more reluctant to take people whose needs are more complex, unless they are satisfied that funding of the care will enable sufficient staffing, and that specialist support will be available when necessary. This can lead to people waiting in hospital for a suitable placement to be identified, sometimes being assessed and turned down by many care homes.                                   

Person-centred care, to understand the roots of emotional and psychological distress, must always be the ‘first-line’ approach to presenting behavioural needs and risks. In 2011, an NHS-wide Call To Action sought to stop the inappropriate prescribing of lowdose anti-psychotic medication in dementia, and ensure that any prescribing is kept under review. These medications are sometimes used to manage behavioural presentations of distress, but have harmful side effects including risk of falls and stroke.                                    

NHS prescribing audits in Leeds during 2012 showed that c. 10% of people with a dementia diagnosis were given antipsychotics, and action included repeat audits and the production of a local guideline. The chart below shows that local action has had a sustained effect: 6.8% of people with a dementia diagnosis had had a prescription in the six weeks to end January 2020, lower than the England average of 9.4%.                                   

During 2017-18, a range of initiatives started to address concerns about people experiencing long delays leaving hospitals. The LYPFT care homes service was enhanced to create an Intensive Care Homes Treatment Team. Additional funding was offered to care homes to enable short-term additional support for people making the transition from hospital, or to avoid admission for people experiencing episodes of distress. There have been good examples of people supported to leave hospital and avoid admission, with a multi-agency approach to supporting care homes to look after people. A programme of work has been set up to develop new services for people with the most complex needs, and achieve further, sustained improvement to timely transfers of care.                                   

During the Covid-19 crisis period, LYPFT seconded staff to strengthen the ‘Intensive Home Treatment Team’, to support people in their own homes. This has had some success at working with families to avoid hospital admissions. Support at home may now be a preferred option for more people, as described above. NHS and domiciliary care providers working in partnership - in a similar way to that described for care home providers - is likely to offer the best way forward to improve support and manage crises at home.                                   

Achievements 2013 to 2020

• NHS clinicians in Leeds have sustained a low level of prescribing of antipsychotic medication
• Leeds City Council has increased fees for dementia specialist care home placements
• LYPFT Intensive Care Homes Treatment Team piloted from July 2018 and established long-term from April 2019
• pilot of the Dementia Transition Fund – a scheme to fund additional care needs to support transition from hospital / prevent readmission
• hospital bed-days lost to delayed transfers of care reduced by c. 50% in winter 2018-19 compared to previous winter

Our approach to make a difference 2020 to 2025

• a new programme of work to develop very specialist bed capacity
• focus on timely support to avoid hospital admission where appropriate
• identify the best funding and procurement option for care services, to ensure the right supply and quality of care for people with more complex needs
• develop medium to longer term care options for people with enduring and complex care needs
• consider 1:1 care and overnight options for people and carers living at home with more complex needs - aim to invest in support at home as well as care homes
• approaches offering arts and creativity for people to express themselves and cope with emotional distress

People with a dementia diagnosis make up approximately 15% of the people who die each year in Leeds; and approximately 15% of people with a dementia diagnosis die each year. These numbers indicate how significant dementia is in developing and improving end of life care.                                   

Dementia is a significant risk factor for being admitted to hospital, having a longer stay in hospital, and for dying in hospital.                                   

It is an ambition for this strategy to enable more people with dementia to be where we would wish to be at the end of life, an ambition shared with the Leeds Palliative and End-of-Life Care Strategy. This has developed seven outcome statements, for people to:                                   

1. Be seen and treated as individuals who are encouraged to make and share advance care plans and to be involved in decisions regarding their care.
2. Have their needs and conditions recognised quickly and be given fair access to services regardless of their background or characteristics.
3. Be supported to live well as long as possible, taking account of their expressed wishes and maximising their comfort and wellbeing.
4. Receive care that is well coordinated.
5. Have their care provided by people who are well trained to do so and who have access to the necessary resources.
6. Be assured that their family, their carers and those close to them are well supported during and after their care, and that they are kept involved and informed throughout
7. Be part of communities that talk about death and dying, and that are ready, willing and able to provide the support needed.

For people with dementia, the opportunity to influence care may come at an earlier stage of the condition, whilst the capacity to think through and decide what we want is relatively intact. This is not easy to do in the face of a progressive condition; people often manage dementia ‘one day at a time’ rather than looking too far ahead. NHS England colleagues supporting the West Yorkshire and Harrogate Integrated Care Partnership have supported a training programme to facilitate advance care planning (ACP), and Leeds now has NHS and third sector staff equipped to train colleagues as ACP facilitators. The idea is that anyone who is known and trusted by a person can have the important conversations about wishes and preferences.                                   

End of life care and dementia benefits from the perspective of dementia as a lifelimiting neurological condition, ultimately affecting a range of physical functioning alongside cognitive abilities; and one which impairs the ability of a person to communicate symptoms such as pain and discomfort. Indeed, the frustrations associated with not being able to explain symptoms may manifest as agitated behaviour, and be misinterpreted.                                   

Achievements 2013 to 2020

• dementia included alongside other long-term conditions in electronic Palliative Care Co-ordination System (ePaCCs)
• Leeds guidance produced on recognition and management of end stage symptoms in dementia
• dementia training for 142 staff at Leeds hospices
• a recognised pain assessment tool for people with dementia is available on Leeds Community Healthcare patient record

Our approach to make a difference 2020 to 2025

• enhance hospice and palliative care teams with Admiral Nursing posts (specialist dementia nursing roles)
• more and better conversations about advance care planning, to avoid unnecessary A&E attendances, admissions and medical treatments towards the end of life
• to improve symptom recognition and pain relief, by establishing a consistent approach to assessing pain, discomfort and other symptoms

Why it's a priority

It's a priority because:                               

• people and carers living with dementia have been particularly affected by the crisis, both the virus itself and the impact of social distancing
• the crisis has led to important services being paused for diagnosis of dementia and support to live well
• restarting services is subject to social distancing and other health protection measures, which will affect service capacity
• there are opportunities to implement learning to make positive changes, such as the use of digital technology and support at home

What the NHS and council will do

The NHS and council will:                               

• support NHS service providers to re-establish services, amend pathways and redefine objectives
• work with community organisations and social care providers to explore options to resume safe face-to-face activities, consider digital alternatives, and understand the impact of the crisis

The outcomes:                               

• the Leeds dementia diagnosis rate will be stabilised and recover towards pandemic level
• support to live with dementia in Leeds will recover and be available in new ways
• people and families will be able to make informed decisions about what services and activities to access

Why it's a priority

It's a priority because:                               

• the population with dementia is anticipated to increase in England and Wales by more than 10% in the next five years, affecting demand on services
• BAME older populations are likely to increase at a higher rate than the White British population
• community organisations have demonstrated their ability to support people and carers, and are seeking opportunities to strengthen provision

What the NHS and council will do

The NHS and council will:                               

• work with universities to develop demographic projections for Leeds
• meet demand by investing in capacity for diagnosis and community support
• evaluate the experiences of people from BAME populations to understand barriers to accessing support
• develop effective approaches to reducing dementia risk linked to health inequalities

The outcomes:                               

• the risk of developing dementia will be reduced
• service development anticipates and keeps pace with emerging needs
• inclusive access to services

Why it's a priority

It's a priority because:                               

• it is an important opportunity for people and carers not receiving support to discuss the progress of the condition and be connected to community services
• there are good examples of care planning and review in primary care, and opportunities for investment in primary care to improve quality and consistency for all
• people and carers who do not access support are at risk of poor health outcomes and presenting in a crisis
• NHS England investment in healthy ageing and frailty, including care coordination and social prescribing, must include people living with dementia

What the NHS and council will do

The NHS and council will:                               

• include dementia in the Leeds Healthy Ageing programme
• ensure new care coordinator roles work effectively with Memory Support Workers
• evaluate how the Collaborative Care and Support Planning approach to annual review is working for people and carers living with dementia

The outcomes:                                          

• people and carers will be connected to support and not slip through the net
• presentations in crisis will be reduced as far as possible
• we will make best use of new investment and include people with dementia in new services
• we will make best use of new investment and include people with dementia in new services
• more people will have advance care plans, anticipating the later stages of dementia
• there will be a reduction in serious falls for people with dementia
• more people will have a care plan and review, including medication review

Why it's a priority

It's a priority because:                                          

• there are opportunities to identify and reach carers in primary care and other health and care settings, aligned to the Leeds Carers Partnership Strategy
• there are support services proven to be effective which could reach more carers
• there are specific gaps in local provision reported by carers
• caring for a person with dementia can be very demanding, and many families show great determination to keep people at home when dementia becomes severe

What the NHS and council will do

The NHS and council will:                                          

• ensure access to care home short-stays bookable in advance
• ensure access to support for BAME carers, including short-stays with language and cultural competence
• seek to invest further in hospital-based support, education, and follow-up to keep in touch with carers who have had an episode of support

The outcomes:                                          

• more carers connected to support, and less risk of presenting in crisis
• improved health, and ability to sustain the caring role

Why it's a priority

It's a priority because:                                          

• it is more difficult to find a good quality care home when specialist dementia care is required
• there are delays for people leaving hospital, especially for people with the most complex needs
• the largest increase in people with dementia in the next five years is projected to be people aged 75-79, who are the most prevalent age group among those admitted to specialist NHS services and be delayed in hospital

What the NHS and council will do

The NHS and council will:                                          

• create a programme of work to develop new specialist beds for people with more complex needs in dementia from June 2020, and longer-term develop purposebuilt accommodation
• sustain support to care homes to meet more complex needs
• seek to invest in support at home for people with more complex needs
• promote the dementia training and support offer for care providers
• through local NHS Trusts action plans, train staff, improve care quality and environments
• apply creative and innovative approaches to offer meaningful activity and self expression

The outcomes:                                          

• significant reduction in delayed transfers of care for people with dementia
• significant increase in specialist care homes rated good or better

Why it's a priority

It's a priority because:                                          

• people with dementia are more likely to be admitted to hospital, have longer hospital stays, and to die in hospital, compared to people in the same age group without dementia
• dementia impairs the ability to communicate symptoms, and make decisions. • There are opportunities in the earlier stages of the condition to plan ahead for the later stages

What the NHS and council will do

The NHS and council will:                                          

• seek to invest in Admiral Nursing roles to work with palliative care teams
• include the needs of people with dementia in the End Of Life Care programme

The outcomes:                                          

• more people will be at their preferred place of care at end of life
• more people who die with dementia will have a record on the Electronic Palliative Care Co-ordination System (EPaCCs)
• more people will receive effective treatment and symptom control in the community (a reduction in the number of unplanned hospital admissions in last 90 days of life)
• more carers will be well supported during the last phase of their loved one’s life and services will be put in place to ensure that symptoms and pain are well managed