Dementia- Shared Expectations of Service Provision Jyoti Ahuja Clinical Psychologist Birmingham and Solihull Mental Health Foundation Trust (BSMHFT)

Profoundly life-changing, for person and family A challenge for society, as much as a medical issue Opportunities and challenges at all stages Role for services/support: far wider than just assessment and treatment Includes prevention to end of life matters Role for the community as well as services

What can the person and their carers expect? Early diagnosis Help understanding condition and making right decisions Appropriate treatment and support To be treated with dignity and respect Knowing how to seek help, and how to help themselves To enjoy life, feel part of community Respect for their end-of-life wishes

Timely diagnosis- advantages People with dementia and carers can receive treatment, care and support (social/psychological/pharmacological) Helps person/carers understand reasons for symptoms, reduces blame/frustration Awareness of risk/lifestyle factors can minimise impact of illness, help live well with condition

“Timely diagnosis of dementia really matters. It is the key to helping people with dementia, their families and carers get the support they need, to plan for the future and to make informed choices about how they would like to be cared for. We know that with early intervention, and access to the right services and support, people with dementia can continue to live well for many years.” (Dementia: A state of the nation report on dementia care and support in England, Department of Health, 2013)

Diagnosis not an end in itself …but a gateway to making informed personal life changes Provides access to range of interventions Also, crucially, to post-diagnosis support and services

NICE guidelines recommend specialist assessment and treatment should be available for everyone NHS England: first ever national goal to improve dementia diagnosis rates. Target: By 2015, two-thirds of people with dementia should receive formal diagnosis + appropriate support

BSMHFT: Memory Assessment Service (MAS) City-wide service for people aged over 18 years Referral via GP All clients offered 4-component assessment process: 1. Pre-assessment counselling 2. Assessment 3. Feedback 4. Support planning

Role of assessment services Accurate and timely diagnosis Anti-dementia drugs (if appropriate) Access to appropriate non-medical interventions Access to support/psychoeducation groups for carers Information on managing affairs such as power of attorney etc Access to support services and benefits

Role for prevention and health promotion Lifestyle changes may help delay onset for high-risk people Campaigns to increase awareness of condition (though national projects e.g. work in schools, Dementia Friends and Champions, local publicity and awareness raising, Dementia-Friendly Communities) GPs to be more proactive in identification for high-risk groups Diverse community needs and supports (Birmingham and Solihull Dementia Strategy )

Role for post-diagnostic support Can help people to remain independent for longer Help people live well with condition Help manage/cope with behavioural and psychological symptoms of dementia Carer support May help slow down progress of dementia Help with planning future

However…. Needs to be a mutual process “No matter how well assessment clinics are run, their success… depends on people being referred before they become too ill, and on their willingness to engage with assessment and treatment process”(Department of Health (2014) ‘Dementia Revealed: What Primary Care Needs to Know’) ‘We need people to tell other people about dementia. Nobody, anywhere in the world knows if they’re going to get dementia and we need to make people aware.’

Vital role for communities and community and faith organisations

Dementia recognised to be the most feared illness in people over 55- “we don’t just fear the loss of memory, but the loss of who we are” An estimated 42% of the population in the UK today know a close friend or family member with the condition 50% of UK adults feel public understanding of dementia is limited 73% feel society is not geared up to deal with the condition Over half report experiencing stigma and isolation

Sadly, extensive research showing stigma to be even more pronounced in some BME/Asian communties The number of people with dementia from black, Asian and minority ethnic (BAME) groups in the UK is expected to rise significantly as the BAME population ages. The All-Party Parliamentary Group on Dementia: many people from BAME communities did not receive a diagnosis of dementia In addition to this, stigma surrounding the condition meant people with dementia and their families faced social isolation, feeling unable to reach out for support.

“The health and care system has a vital role to play in improving support for people with dementia. But it can’t do it alone. This is a call to the whole of society. We want to create communities where people are more aware of dementia, understand it and know how to help. We want communities where people with dementia and their carers are encouraged to seek help and support and feel able to go about their daily lives safely and free of stigma” (Dementia: A state of the nation report on dementia care and support in England, Department of Health, 2013)

Health and care services, while fundamental, cannot alone ensure people with dementia live good quality lives. Support from wider communities, services and organisations is needed, utilising the untapped potential of communities to help people with dementia and their carers (DoH, 2013)

“Community organisations and social networks can do so much to help people, as activity, emotional support and social networks, are as, if not more, important than medical interventions in staying well” (Dementia Action Alliance)

“Treat us properly and with respect. We are not mad; this is just something that has happened to a part of my brain” Research shows avoidance as the dominant response in people- even if sympathetic, many people do not feel comfortable enough to engage with them or to help (DoH, 2013) Commonly reported that people lose friends after a diagnosis

Dementia friendly communities- Potential to transform the lives of people with dementia in England

The little things… Contrary to common perceptions, there is a great deal that can be done to help people with dementia… It is often about the simple things, things that most of us take for granted, like making a cup of tea, that – without support– someone with dementia can find practically impossible (DoH, 2013)

Way forward: working together A better world for people and families living with dementia

Way forward: working together A better world for people and families living with dementia