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P16. Perceptions of dementia

Detailed Programme, abstracts and presentations

P16. Perceptions of dementia (Saturday, 6 October, 8.30-10.00, Europa 4)

P16.1. Can there be meaning in dementia?  Some lessons from Viktor Frankl

Susan H. McFadden

People who receive the diagnosis of dementia, along with their family members and friends, often wonder if any meaning in life can remain in the face of forgetfulness, confusion, and frailty.  In his writings about Logotherapy, Viennese psychiatrist Viktor Frankl claimed that meaning can be found even in suffering.  Although Frankl did not write specifically about dementia, he did address issues of aging later in his life.  Scholars in the field of pastoral care and counseling with elders have found rich resources for their practices in Frankl’s writings.  Their work aligns well with the research and writings of Thomas Kitwood and many others who value a holistic approach to personhood.  This paper reports on observations of persons with advanced dementia living in a memory care residence and shows how their gestures, vocalizations, and behaviors reveal expressions of meaning that resonate with Frankl’s ideas. 

P16.2. Perspectives on Alzheimer’s disease among the general public, family and professional caregivers in France

François BECK, Christophe LEON, Stéphanie PIN

In the context of the 2008-2012 French Alzheimer’s Plan, an opinion survey programme was implemented in order to gain a better understanding of perceptions of this disease among several populations. This presentation aims to compare perceptions, opinions and levels of awareness among the general public, immediate caregivers (relatives, family and professionals affiliated with home care and assistance units). These populations were surveyed using special questionnaires, within the context of telephone or face-to-face surveys offering different perspectives on Alzheimer’s disease.

This programme is a combination of qualitative approaches, prioritising increased understanding of the perceptions, expectations and needs of the populations involved, as well as quantitative methodologies to provide numerical indicators which can be monitored over time.

The ideas associated with Alzheimer’s disease are mainly memory loss, dependency and loss of intellectual capacities. The importance assigned to these aspects varies among the populations: for both the general public and friends and family, memory loss is cited the most, while professionals were more likely to emphasis dependence. The effect on the memory is the most commonly admitted aspect, it is this image that the general public thinks of, especially the younger element. The term “Alzheimer’s” has been trivialised to represent any benign memory lapses. The disease’s social and epidemiological significance and its inevitable and incurable nature are universally recognized. Among the general public, these perceptions translate into a significant fear of contracting the disease. Moreover, 31% of laypersons surveyed reported that they were uncomfortable with people suffering Alzheimer’s disease and nearly half of friends and family felt excluded by the disease. Nevertheless, overall reported levels of awareness regarding Alzheimer’s disease have increased.

Both in the literature and in the spontaneous discussions with our surveys, Alzheimer’s disease is perceived as a disease that particularly concerns the people close to the patient. Family members are often presented as the disease’s main victims. The characteristics of Alzheimer’s disease make those affected by it unconscious of their difficulties, cut off from reality and incapable of expressing their needs and desires.

However, the patients appear to be conscious of their difficulties and problems. Some of them are able to give their opinion on the assistance that is proposed to them and especially regret not being sufficiently involved in the decisions that affect them. Finally, despite a negative experience overall, those interviewed come to terms with their disease better than expected.

These findings encourage the development of initiatives aiming at combating the stigma surrounding people suffering from dementia and their friends and family, in particular by promoting awareness of the early and moderate stages of the disease.

P16.3. Evaluation of 'The Alzheimer Experience', an online interactive media production to experience dementia

Marjolein Veerbeek, Bernadette Willemse, Rob Groot Zwaaftink, Dieneke Smit, Marco Blom, Jacomine de Lange, Anne Margriet Pot

To raise awareness of how people with dementia perceive their world ‘The Alzheimer Experience’ has been developed ( ‘The Alzheimer Experience’ is a free, online, interactive media production that follows the life of two people with Alzheimer as seen through their eyes. The storyline is build-up around 22 filmed, intense scenes, that each focuses on experiences that are typical for people with Alzheimer’s. The film can be watched from different perspectives: that of the person with dementia, its relatives and caregivers. The scenes have a high emotional content, ensuring a large impact on the viewer. In every scene, the user can get factual explanation on what happens in the scene and how it relates to the disease. In addition, information about the etiology and course of dementia is provided.  The main aim of this online interactive media production is to give insight into the experience and needs of people with dementia to the wider public, and to enlarge the understanding of the behavior of people with dementia. This is vital for a good approach of and interaction with people with dementia. 

To test whether ‘The Alzheimer Experience’ has the intended effect on its users, the intervention is evaluated. Pre- and post measurements were conducted when opening the website and closing the website and included the following topics: 1. Factual knowledge about dementia, 2. Knowledge about consequences for caregivers, and 3. Approach towards people with dementia. Preliminary results (n = 134) show that 56% of the people that watched 'The Alzheimer Experience' worked with people with dementia (mostly in a nursing home or residential care home (40%)) and 52% had a relative (mostly parent (-in-law) (40%)) with dementia. Mean age of the respondents was 46 (range 17 - 73). The approach towards people with dementia and knowledge about dementia and the consequences for caregivers of the total group was good and did not improve after watching 'The Alzheimer Experience'. However, the people that belonged to the 50% that scored lowest at pre measurement had a significant better knowledge about dementia (t = -2.59, df = 73, p = .01) and consequences for caregivers (t = -4.35; df = 67; p = .00) after watching 'The Alzheimer Experience' and they had a more person centered approach towards people with dementia (t = -2.95; df = 64; p = .00). Especially people who had a relative with dementia, or who were not familiar with dementia at all (i.e. did not work with people with dementia nor had a relative with dementia) seemed to have a relatively low score at pre measurement. These results indicate that 'The Alzheimer Experience' reaches its aim in people who have relatively little knowledge about dementia. During the presentation, final results of this evaluation will be presented.

P16.4. Experiences, knowledge and attitudes about dementia of informal caregivers within the Turkish, Moroccan and Surinamese communities

Nienke van Wezel, Anneke Francke, Marco Blom

Objective: The objective of this qualitative study is to gain more insight into the experiences, knowledge and attitudes of informal caregivers within the Turkish, Moroccan and Surinamese communities. Informal caregivers are defined as relatives, partners, friends and neighbors who care for family members with dementia. The following research questions will be answered in this study:

  1. How do informal carers of people with dementia within the Turkish, Moroccan and Surinamese communities experience caring for and dealing with these people?
  2. What knowledge and attitudes, do these informal caregivers have about dementia?

Method: To answer the research questions, 52 semi-structured individual interviews were conducted with informal caregivers of (a) Turkish, (b) Moroccan or (c) Surinamese origin. These semi-structured individual interviews were held in their native language. The interviews are based on a semi-structured topic list. The interview topics are about the perception of dementia, the attitude towards dealing with a loved one with dementia, the level on which dementia is open to discuss in their native communities and within their families. The recruitment was based on the principle of theoretical saturation and theoretical selection. That means that new interviews were conducted until no new information came up and that insights from the first interviews were guiding the choice of caregivers for the later interviews.

In addition to the 52 individual semi-structured interviews, six focus groups with informal caregivers of Turkish, Surinamese and Moroccan origin were held. The central theme in these focus groups was the openness and shame towards dementia and experiences about dementia in relation to the native communities and healthcare professionals. The focus groups were organized by culture. In the analyses a distinction was made in focus group discussions of (a) people of Turkish or (b) of Moroccan descent, or (c) of Surinamese descent who are dealing with a relative who suffers from dementia or severe memory problems.

Analysis of individual interviews and group interviews:The obtained transcribed interviews and focus group discussions were first open encrypted, using keywords that are directly derived from these texts. Then there was a more selective encryption based around central concepts from the first analysis. These central concept were further analysed by using the computerprogramne MaxQda.

Preliminary results: The first results show that informal caregivers from a non western culture  experience caregiving as a assignment. This assignment is largely based on religious or cultural beliefs. The main informal care is provided by the female partner or daughter (in law). Remarkably, by giving informal care an important social status is obtained within the native community. These first outcomes show important relations with the acceptance and use of professional care and the communication about dementia with family members or professional caregivers.

P16.5. What do we Know  about Understandings and Attitudes to Dementia?

Suzanne Cahill, Maria Pierce and Andrew Darley

This paper reviews the international literature on the topic of dementia literacy (knowledge, beliefs) and attitudes to dementia and argues that there are significant cross-cultural differences in levels of awareness about dementia among the general public. There are also considerable differences in older peoples’ fears and anxieties about getting a dementia and in the public’s perceptions of risk and prevention. The main methodologies used to date to undertake research on this topic are described and critiqued and an argument is marshaled that there is a need for more qualitative research to be conducted in the area. In particular, in the Republic of Ireland, there is a dearth of information available on the topic of the public’s understandings of and attitudes to dementia. In order to plan effective public awareness and advocacy campaigns it is important that this gap in our understanding of dementia is narrowed and that more qualitative research is undertaken on the topic.

P16.6. Lay persons' beliefs and knowledge about Alzheimer's disease: Are there gender differences?

Perla Werner

Background: Recent dementia strategy campaigns stress the importance of public and professional awareness about dementia as one of their main priorities. Studies within the context of Alzheimer's disease (AD) in this area are few and show that levels of worry and concern about AD are relatively low in lay persons. Since clear gender differences have been reported in the incidence and prevalence of dementia, as well as in its consequences, gender could be hypothesized as one of the factors influencing worry and concern about developing AD.

Objective: The aim of the present study was to assess gender differences in public’s beliefs about AD, and to examine whether men and women differ in their worries and concerns about developing the disease, as well as in their knowledge about it.

Methods: A phone survey was conducted with a representative sample of 632 lay persons (mean age = 45) in Israel. Information regarding males and females' perceptions about their susceptibility, worry, fear and knowledge about AD was assessed.

Results: Males and females showed no statistically significant differences in their awareness of AD. Female participants consistently reported higher levels of perceived susceptibility, worry, fear, and knowledge about AD than male participants.

Conclusions: Our findings highlight the need to improve the knowledge and awareness of the general public about AD, and particularly among men.



Last Updated: Thursday 15 November 2012