How research helps people with dementia

Tom Dening24th November 2015

HWB dementia event, Nottingham

Overview

• purposes of research• types of research in dementia

– cause– cure– care

• how it helps• how you can help

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What’s research for?

• we all use research– evidence based practice– technology in everyday life

• taking part in research– commoner than you think, e.g. just think of all those online

surveys! Loyalty cards etc.

• supporting research– displaying literature– thinking of research in planning services

• doing research– less common– led by academics but we can’t do it without help

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Dementia research

Usually divided into:• Cause• Cure• Care

Let’s think about each type:

which gets most money?

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Cause

Includes- basic scientific research

- animal models, cellular processes, protein chemistry

- molecular genetics- brain imaging- classification & epidemiology

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HWB dementia event, Nottingham

Genetics

What has this told us?• undoubtedly, dementia has a significant inherited component• small number of rare cases where Alzheimer’s disease results from

a single gene• some other forms of dementia, e.g. frontotemporal dementia, where

single genes are important• other genes that carry increased but small risks• recent studies include massive numbers in order to show these tiny

risks• current emphasis is on epigenetics, i.e. how genes act

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HWB dementia event, Nottingham

How does this help us?

• we can give more confident advice to people with dementia & families about familial risks

• if we understand how the genes actually work, this may suggest new types of treatment

• in practice, clinical genetics advice is not useful and not required

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Classification

• scientists love this• diagnostic and research criteria for

dementia and causes of dementia are frequently refined– DSM5 and ICD11– criteria for AD, VaD, DLB, FTD etc

• neurocognitive disorder v dementia

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How does this help?

• clearer diagnostic criteria are helpful in clinical practice: people want to know what’s wrong with them

• research criteria are important as want to have clearly defined groups

• however, in practice, many people with dementia are elderly and mixed forms of dementia are common

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Epidemiology

= the study of the occurrence, transmission and control of diseases:

– how common a disease is– possible risk factors– changes over time– what sort of possible interventions may help

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How does this help?

We need to know how many people have dementia now, and how many are expected in the future

– recent changes in UK numbers based on recent research (approx 750,000)

– prevalence rate has fallen in recent years, doubtless due to better population health

– numbers are essential for planning services

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Cure

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Approaches to treatment

• prevention • existing drugs

– cholinesterase inhibitors– memantine– symptom reduction

• non-pharmacological treatments• future prospects

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Prevention

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Action on modifiable risks, including tobacco, poor diet, physical inactivity, and alcohol, and consequent reductions in raised blood pressure, blood cholesterol, obesity, and diabetes could prevent between 3% and 20% of predicted new cases of dementia in 20 years.Lancet 2015; 383: 1805-16

HWB dementia event, Nottingham

Existing drugs

• cholinesterase inhibitors– donepezil, rivastigmine, galantamine– available in UK since 1997– modest alerting effects– DOMINO-AD trial looked at effects of stopping

donepezil and effects on needs for long term care

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DOMINO-AD trial: Effects of stopping donepezil and/or memantine (Howard et al, 2012)

HWB dementia event, Nottingham

DOMINO-AD trialRisk of nursing home placement (Howard et al, 2015)

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Other medications

• memantine– limited utility, though very safe

• drugs to treat symptoms– antidepressants– antipsychotics– NB side effects!

Banerjee 2009:

est. 1800 excess deaths

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HWB dementia event, Nottingham

Future prospects

• most interest in anti-amyloid drugs in Alzheimer’s disease e.g. solanezumab

• other trials include ‘repurposing’ of existing drugs, e.g. – minocycline (antibiotic)– liraglutide (drug for diabetes)

• many trials of other substances have been unsuccessful: – hormones, vitamins, Gingko, anti-inflammatory drugs

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We commit ourselves to … the ambition to identify a cure or a disease-modifying therapy for dementia by 2025 and to increase collectively and significantly the amount of funding for dementia research to reach that goal.

HWB dementia event, Nottingham

Care: psychological and social approaches

Comprises:• services

– diagnosis, information, advice, support– personal care– care homes– NHS and hospital care

• interventions– treatments for symptoms or behaviour

• activity and participation– exercise, arts, technology– citizenship, social inclusion, spirituality

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Research on Care

• increasing importance because of lack of Cure

• Cure by 2025 won’t help anyone living with dementia now

• important public contribution to setting the research agenda (James Lind-Alzheimer’s Society, 2013)

• a couple of examples

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The final top 10 priorities

1. What are the most effective components of care that keep a person with dementia as independent as they can be at all stages of the disease in all care settings?

2. How can the best ways to care for people with dementia, including results from research findings, be effectively disseminated and implemented into care practice?

3. What is the impact of an early diagnosis of dementia and how can primary care support a more effective route to diagnosis?

HWB dementia event, Nottingham

Research on diagnosis

Important findings:• screening for dementia is not justified• timely diagnosis is important• diagnosis rates for dementia are low but have been

improving• different types of memory assessment service can be

effective• no simple test for dementia, though tests for causes of

dementia becoming more sophisticated

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Care home research

Important findings:• increasing number of recent studies• ENRICH (Enabling Research in Care Homes) – national

initiative to promote CH research

• about 1/3 people with dementia in CH, about 80% of CH residents have dementia, also high levels of physical comorbidity

• NHS interface with CHs is important, e.g. admissions to hospital, relationships with GPs and other professionals (Optimal study)

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How does Care research help us?

• we know more about what works and what doesn’t

• it promotes attention to good physical and mental health

• need for participation and equality• important messages for professionals• need to promote dementia awareness and

skills in working with people with dementia

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How does Care research help? 2

• makes a difference for people with dementia and their families

• opportunities to participate in and to shape research– Join Dementia Research

• many challenges though, especially:

Who pays for what???

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How you can help

• dementia awareness– Dementia Friends– Dementia Action Alliance– Dementia Friendly Communities

• personal involvement– own families and social circles

• your role as a Health & Wellbeing Board– advocate for and ask difficult questions

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Thank you tom.dening@nottingham.ac.uk

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