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P7. Perceptions and image of dementia

Detailed programme and abstracts

P7. Perceptions and image of dementia (Tuesday 1 Nov., 16.00 - 17.30)

P7.1. New energy for young dementia: the Nepal experience

VERSCHRAEGEN Jurn, VANDENBULCKE Mathieu

Most reports on early onset dementia (EOD) deal with deficits and deterioration. Yet, people with EOD seek for ways to deal with the condition. Together with their families, they try to find meaning, challenges and new balances despite the condition. The project 'New Energy For Young Dementia' aimed to highlight the capabilities and strengths of people with EOD and raised awareness on EOD in a positive way.Together with their caregivers and healthcare professionals, 3 people with early onset Alzheimer’s disease participated in a 10 days expedition in the Himalayas (10/23 to 11/5/15). Emancipation and empowerment were the keys for this ambitious and unseen project. The ultimate goal: encouraging people with EOD to deal with and rise above the condition. To reach this goal, the group, accompanied by a medical team, went ‘back to basics’. We chose Nepal because the highest mountain chain was an appropriate metaphor for the challenges that people with EOD meet. Moreover, in light of the recent natural disasters in Nepal, the intention of ‘New Energy For Young Dementia’ to support the struggle for a decent life couldn’t be more symbolic. Also, Nepal is a country with an increased prevalence of dementia (from 78.000 in 2015 the number in Nepal will rise to 134.000 in 2030) and a struggle for openness in the discussion of the condition. The expedition to some extent was an observational study, and the outcome demonstrated that people with EOD are still capable of great performances if they are surrounded by a supportive and stimulating environment. We made a documentary that will be broadcasted on national television in Belgium around 9/21. The Lancet Neurology published a report on this expedition, online since December 2015 (http://dx.doi.org/10.1016/S1474-4422(15)00388-9).

P7.2. Persons with dementia understanding of the dementia diagnosis

XANTHOPOULOU Penny, MCCABE Rose

Background: Dementia diagnostic rates have increased considerably in the UK, by 14% in 5 years. Recently more studies are looking into the experiences of persons with dementia, professionals and carers, moving away from a solely biomedical model of understanding dementia. However, most recent qualitative research focuses mainly on experiences of caregivers or healthcare professionals.

Aim: To explore the experience of people who have recently received a diagnosis of dementia. 

Methods: Data were collected as part of large mixed methods study: Shared decision making in mild to moderate dementia (REC 13/L0/1309). In-depth interviews were conducted with 55 persons with dementia who had received a diagnosis of dementia in the previous week. Participants were in the mild to moderate stages of dementia. Audio recordings of the interviews were transcribed and coded using NVIVO10 software and analysed using thematic analysis. Interviews aimed to elicit participants’ understanding and experience of their diagnostic appointment and their response to receiving a diagnosis of dementia. The topic guide was developed with the Alzheimer's Society Research Network in order to ensure the relevant questions are asked. It included topics such as understanding of diagnosis, person’s with dementia autonomy, disclosing their diagnosis and decision making about their health. 

Results: Persons with dementia described dementia in terms of their personal experiences (knowing people with dementia), old age and normalisation of memory problems, fear and stigma of dementia. Persons with dementia highlighted that disclosing/sharing their diagnosis of dementia, even with close family members, is a worry for them.

Conclusions: Despite government efforts to raise dementia awareness and combat the stigma associated with this diagnosis, there is still stigma attached to dementia for people recently diagnosed with dementia, with implications for sharing their diagnosis with family and friends.

P7.3. Taboo and stigma – Perceptions and images of dementia

HANSEN Anette, HAUGE Solveig, BERGLAND Ådel

Background: Over the last decades organizations and governments have run numerous information campaigns to raise awareness and knowledge about dementia, but the syndrome is still perceived as a sensitive and tabooed topic. Health-professionals often experience communication about dementia to those living with the syndrome and their relatives as challenging. Failure to communicate clearly during assessments may threaten an appropriate allocation of individual tailored health care services. This study investigated communication challenges related to dementia in the context of assessment and allocation of home care services.

Methods: The study had a qualitative approach with a descriptive design. Two sources of data from four Norwegian municipalities were applied; four focus group interviews with the purchasers who assessed the needs for health care services, and a review of 246 administrative decisions written by the purchasers responsible for allocating the services. The data was analysed by qualitative content analysis.

Results: The purchasers communicated in a conscious and flexible way with an ideal of being open. However, euphemisms and omissions were extensively used. Four justifications for the chosen way of communicating about dementia were identified: avoiding disclosure, protecting the person with dementia, protecting the family and avoiding conflict between the person with dementia and his/her family, and lastly the topic of taboo and stigma.

Conclusions: The fact that the purchasers found it challenging to communicate about dementia when assessing needs for health care services might threaten their ability to identify needs properly and provide good health care. It may also be a threat to involve persons with dementia in decision-making about their care. Persons with dementia may not receive appropriate, individually-tailored care because the main reason for the provision of healthcare is not discussed properly.

P7.4. AlzTalks – putting people with dementia centre stage

LEONARD Tina

“You have to wake people up. To revolutionise their way of identifying things. You’ve got to create images they won’t accept. Make them foam at the mouth. Force them to understand that they’re living in a pretty queer world. A world that’s not reassuring. A world that’s not what they think it is.”

Pablo Picasso
In its public awareness work The Alzheimer Society of Ireland (ASI) seeks to change perceptions of dementia and as a result how we act for and towards people with dementia in our families, in communities, in organisations and in policy decision making.

The presentation will showcase AlzTalks, an ASI initiative to build awareness about Alzheimer’s and dementia by shattering perceptions and expectations through placing the voice and the ability of the person with dementia literally centre stage.

The AlzTalks model includes an event that is an evening of song and talk; a celebration of life which also serves to build awareness of the illness of dementia.

The talks at this event are delivered by people with dementia and from people with an interesting perspective on dementia. These talks are filmed, packaged and branded as AlzTalks and disseminated through social media and online via a unique You Tube channel.

We know that stigma poses an obstacle to the well-being and quality of life of both persons with dementia and their families. By placing the voice of the person at the core, we can help people to see the person first and not the illness. This humanising and respectful approach will be explored in this presentation.

The presentation will showcase AlzTalks from concept to delivery and also share our vision of AlzTalks potential growth and development by other countries joining and participating in the initiative.

P7.5. Knowledge and fear of dementia following a training program for older persons

SCERRI Anthony, SCERRI Charles

Background: Although the impact of dementia training program directed to informal and formal caregivers has been extensively studied, programs for older persons who do not have the condition are relatively few. Moreover, increased knowledge about dementia is generally thought to increase fear of the condition, even though there is little empirical evidence to support this.

Methods: The aim of this study was to investigate the impact of a dementia training program for older persons on their knowledge and fear of the condition. Participants consisted of one hundred and ten older persons (age ranging from 61 to 84 years) who voluntarily applied for a 16 hour course as part of the University of the Third Age. The program was repeated twice in two localities in Malta.  The questionnaire, consisting of two validated tools (Alzheimer’s disease Knowledge Scale and the Fear of Alzheimer's Disease Scale), was distributed pre- and post-training to the participants.

Findings: Sixty six questionnaires (response rate=60%) were collected at the start of the program and 46 at the end (response rate=42%). In the pre-training phase, the participants’ fear of dementia was significantly related to their current dementia knowledge and attendance to previous dementia training program. Having a family member with dementia did not have an effect on the participants’ knowledge or fear prior to training. Training significantly improved dementia knowledge but the participants’ perceived fear of dementia did not change.

Conclusions: The study indicated that dementia training program for older persons can increase their knowledge but does not necessary increase their fear about dementia.  Awareness raising training programs should target more this age cohort who may be concerned and are seeking learning opportunities to know more about the condition.  

P7.6. “Oh, if our community find out…We’ll be treated differently”: understanding South Asian cultural perceptions of dementia

ATCHA Maaria, FROGGATT Katherine, KEEGAN Thomas, BARNSLEY Kenneth, BINGLEY Amanda

People from the South Asian population are observed to have an elevated risk of developing dementia, related to a high incidence of diabetes and hypertension. However, this population appears to be under-represented in dementia research and the provision of services. The disparity between the prevalence of people with dementia and the reported incidence of dementia, especially among South Asian populations (the United Kingdom’s largest ethnic minority), is of concern to public health service providers. This paper reports on mixed methods doctoral research that aimed to identify the social and cultural issues affecting the decisions of those people with dementia and their families in the South Asian population in Blackburn with Darwen (BwD), seeking health and social care support.

The research involved two phases: Phase 1 assessed the incidence of dementia in BwD analysing routinely collected demographic data including age, sex, and ethnicity. Phase 2 used qualitative methods to explore how members of the BwD South Asian population perceived dementia and those with relatives with the condition engaged with local dementia care services. Data was collected via three focus groups with people involved in a community project; dyad interviews with people living with dementia and their families; and interviews with health care professionals working in dementia services.

Early findings suggest these South Asian participants hold negative perceptions of dementia strongly influenced by cultural beliefs, resulting in people with dementia being considered stigmatising and are hidden away by their families. This may explain why health professionals report that this population seek help late in the illness, and there is an argument for public health services to develop culturally relevant outreach programmes based on the Alzheimer’s Society ‘Dementia Friendly Communities’.

 

 
 

Last Updated: Tuesday 10 January 2017

 

 
  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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