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P9. Policies and strategies: Awareness campaigns

Detailed programme, abstracts and presentations

P9.1. Implementing the 'Dementia: Understand Together' national public awareness campaign in Ireland

DE SIÚN Anna, GUIRY Róisín, CONWAY Cairín

Health Service Executive, Dublin, Ireland

Background: Better Awareness and Understanding is a Priority Action Area in the Irish National Dementia Strategy (DoH, 2014). €2.7 million was allocated for a national information and support campaign for people with dementia and their carers, led by the HSE in partnership with the Alzheimer Society of Ireland (ASI) and Genio.

Implementation: An extensive research programme was conducted during 2015/2016. Based on the findings a strong, clear identity for the campaign was developed. Dementia: Understand Together was designed to be a unifying symbol across a diverse spectrum of partners, clearly outlining the need for greater compassion and awareness about dementia, and for everyone to play a part in challenging stigma and making our society more dementia inclusive.

A range of assets have been created including; a suite of television and radio ads, a social media campaign and a PR campaign. A ‘one-stop-shop’ website (www.understandtogether.ie) includes a service finder to allow people find supports and services in their area. A community activation programme is being implemented to support communities to take steps to be more inclusive of people with dementia and their families.

Impact to Date: The average weekly call rate to the ASI helpline increased by 29% compared to the same time period the preceding year. A mid-term survey of a representative sample of 1,003 adults found that 63% could recall at least one TV ad. There was also a significant improvement (from 24% to 33%; P<0.001) in those who claimed to know at least something about dementia and or Alzheimer’s, and an increase (40% - 52%) in those now believing that people with dementia can participate in a wide variety of activities and interests.

Conclusion: A needs-informed, targeted, and multi-faceted awareness campaign can influence general population information seeking, self-rated knowledge, and attitudes towards dementia, at least in the short-term.

P9.2. Dementia undetected or undiagnosed in primary care: The CFAS II Dementia Diagnosis Study (CADDY)

DENING Tom1, ALDUS Clare2, ARTHUR Antony2, ROBINSON Louise3, BRAYNE Carol4, MATTHEWS Fiona1, FOX Chris2, STEPHAN Blossom3, SAVVA George2

1University of Nottingham, Nottingham, United Kingdom, 2University of East Anglia, Norwich, United Kingdom, 3University of Newcastle, Newcastle upon Tyne, United Kingdom, 4University of Cambridge, Cambridge, United Kingdom

Much effort has gone into increasing dementia awareness and dementia diagnosis rates, but why don’t some people have a diagnosis? What are the consequences of not being diagnosed?

The CADDY study investigated: (i) levels of undiagnosed dementia; (ii) characteristics and risk factors of undiagnosed dementia and (iii) outcomes of dementia diagnosis.

Methods: We used data from CFAS II, a population-based study of 7500 community-dwelling individuals aged 65+ (http://www.cfas.ac.uk/).  Participants were interviewed twice, at baseline and 2 years, regarding cognition, social contacts, health status and a diagnostic assessment of dementia. We examined the primary care medical records of 445 people with, and 153 people without, a CFAS II diagnosis of dementia to see whether they had a record of dementia diagnosis or cognitive impairment.

Findings: 42% of people with a study diagnosis of dementia also had a diagnosis in primary care. Another 21% had a record of cognitive concern or referral to memory services. Around 20% of those with a study diagnosis of dementia died without being diagnosed. 

Objectively measured memory impairment and informant reports of memory problems were the strongest predictors of diagnosis.  However, neither the severity of non-memory cognitive impairment nor non-cognitive symptoms affected diagnosis rate. Adjusting for dementia severity, being older, male, and cardiovascular comorbidity increased the risk of missed diagnosis.

We found no evidence of improved outcomes for people with diagnosed dementia versus those without diagnosis.

Discussion: Dementia is usually publicised as memory impairment. We are better at diagnosing dementia in people with mainly memory impairment and less good where there is significant non-memory impairment. Thus we should emphasise that dementia may also present with non-memory symptoms.

Direct evidence for benefits of diagnosis on health outcomes is lacking. Probably, patients and carers need better post-diagnostic support and services to benefit from enhanced diagnosis rates.

P9.3. Salford INSPIRE and the rise of Mr Alzheimer's

WATSON Joy1, SMITH Emma1, SWARBRICK Caroline2, MANN Jean1, KEADY John2,3

1Age UK Salford, Salford, United Kingdom, 2The University of Manchester, Manchester, United Kingdom, 3Greater Manchester Mental Health NHS Foundation Trust, Manchester, United Kingdom

Salford INSPIRE is a joint collaboration between the University of Manchester (UK) and Age UK, Salford. Funded by the Economic and Social Research Council / National Institute for Health Research, Salford INSPIRE employs a person living with dementia (Joy Watson) and supporter (Emma Smith) with the remit of developing and piloting an awareness-raising campaign and also facilitate a suite of creative events aimed at supporting people living with dementia resident in the community. Through a volunteering collaborative of people living with dementia and family members, Salford INSPIRE has driven forward an innovative agenda in awareness-raising, inclusive of the diverse visions and aspirations of those involved. This presentation outlines the Salford INSPIRE model, aimed at empowering people living with dementia to raise awareness of dementia through their own lived experience in a supportive, enabling and creative environment. We will also share our journey setting up an intergenerational campaign called ‘Mr Alzheimer’s’, which is currently being piloted across three local primary schools in Salford. An initiative developed by Joy Watson, ‘Mr Alzheimer’s’ is aimed at creating a safe space for children to talk about memory problems and dementia. Supported by the three school councils (a body comprised of pupils), the children have been involved in developing Mr Alzheimer’s backpacks, which include a Mr Alzheimer’s teddy (safety certificates obtained), picture book and child-accessible information. We will share some of our approaches to engagement and responses from some of the children. We will conclude with some reflections and share our plans for rolling out the campaign on a wider scale.   

P9.4. Enhancing the support of offenders with dementia: understanding the issues and raising awareness

BROOKE Joanne

Oxford Brookes Univesity, Oxford, United Kingdom

Objectives: The prevalence of dementia in custodial services is increasing however, information is limited. The aim of this study was to: describe the current knowledge and skills of staff and offenders involved in the care and support of offenders with dementia.

Methods:Interviews (n=5) and focus groups (n=10) were conducted within a category C male prison in the South of England, including both staff (healthcare professionals, social workers, probation officers, educationalists, and prison service staff) and prisoners with special roles such as buddies, listeners or those that attended groups developed for older prisoners. Interviews and focus groups were audio recorded, transcribed verbatim, and thematic analysis was completed.

Results: Data were collected in 2017, with a total of 38 participants, including: prison staff (n=11), educational staff (n=3), nurses (n=7), social workers (n=3), and prisoners including: buddies (n=4), listener (n=1), and older prisoners (n=9). Three themes included: Development of health and social care in prison: are we just playing at it? Assessing and understanding behaviours: we are not trained in that type of stuff? Impact of dementia on prisoners and the prison service: all we can do is keep them safe, keep the regime running.

Conclusion: Staff believed the prison setting, with well-established regimes, was a supportive environment for people with dementia as there was less risk for accidental self-harm. Whereas offenders who had had completed a training programme to support fellow offenders with dementia (buddies) had a greater insight into the needs of this population. Buddies discussed a disrupted prison regime, which had a destructive impact on offenders with dementia, and they felt they were left ‘firefighting’. Further education and training is required to develop a united understanding on how to better support prisoners with dementia.

P9.5. Receiving a dementia diagnosis: Using personal experiences to raise awareness of needs

LEONARD Tina1, ROWSOME Michael2

1The Alzheimer Society of Ireland, Dublin, Ireland, 2Dementia Carers Campaign Network, Dublin, Ireland

Emotionally it is a hammer blow. It is a serious, it is a depressing thing, it just knocks you sideways. All I was left with was the sickening sense of loss. (Person with dementia speaking of their diagnosis, National Dementia Office post-diagnostic support needs analysis, 2018.)

This presentation will discuss an awareness campaign focusing on educating healthcare professionals about the supports people want and need when receiving a dementia diagnosis. 

Ireland's National Dementia Strategy (2014) includes in its objectives that there should be "sensitive disclosure of a diagnosis and discussion of dementia, taking an individualised and person-centred approach" and that "following a diagnosis, people with dementia and their carers know where to seek help or support, who to talk to about accessing services or entitlements and where to go for information". 

The campaign gives voice to the experiences that can inform these objectives and was conceived and produced by two self-advocacy groups, the Dementia Carers Campaign Network and the Irish Dementia Working Group, together with the Alzheimer Society of Ireland (ASI). It was launched in January 2018.

The faciliated discussion that brought the Groups to their decision to focus on diagnosis will be described, followed by an overview of the process of content creation and the production of a video which highlights different experiences people have had of receiving a diagnosis. It lies at the core of the campaign, and all of which was written by and stars members of both Groups. https://youtu.be/STBw-k1Hl28

With the aim of raising awareness among healthcare professionls, the process of collaborating with health educators, professional medical groups and the National Dementia Office in order to disseminate the video will be described, along with the personal experience of one carer of his presentations to healthcare professionals in the promotion of this campaign.

P9.6. "Changing the perception of Alzheimer's disease": a nationwide awareness campaign led by France Alzheimer's

GILLY Lorène

France Alzheimer et maladies apparentées, Paris, France

Since the dawn of our activity supporting those affected by the disease and their helpers 30 years ago, we have drawn alarming conclusions: stigmatization and discrimination are the two major obstacles which people with dementia and their families face on a daily basis. They are on the first line when it comes to the diagnosis, and yet the last to be consulted when it comes to the care process. This contradiction compels us into collective self-assessment. We all want to be helpful. But even more so when facing a disease which provokes mixed reactions such as fear, trivialization, anxiety and even derision.

It is urgent to dismantle these stigmas which, on top of the grief they inflict, are hindrances to the diagnostic. Because life continues, after this diagnostic. The sick people and their families want to live life with its joys and good moments. Since January 2018, France Alzheimer and related diseases has launched a nationwide awareness campaign to tangibly address their expectations, and for society to adapt to their reality.

For the occasion, we have naturally listened to those directly affected by Alzheimer’s. With a chosen and fitted care program, they engage in activities of their liking, develop new ones, and remain in command of their own lives for years ahead.

The promoted messages are inspired by their strength, optimism and their love of life.

As citizens, we bear the responsibility of treating and seeing those affected by Alzheimer’s with caring eyes. Together, let us choose to not anticipate their hardship and put their emotional wellbeing at risk; to see their abilities rather than their shortcomings. Let us help them to always enjoy life !

 

 
 

Last Updated: Tuesday 13 November 2018

 

 
  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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