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Parallel Session: Young people with dementia and young carers

Abstracts and presentations

Alcohol, ageing and dementia: a Scottish perspective

Louise McCabe, University of Stirling, United Kingdom,

There are complex relationships between alcohol use; processes of ageing both social and biological; and cognitive impairment. This paper takes Scotland as a case study to begin to unpick and explore these relationships and their implications for people who drink as they age. Scotland has a long history of alcohol problems and high levels of alcohol related morbidity.

Alcohol plays a complex role in the culture of the country with most people agreeing that ‘drinking is a major part of the Scottish way of life’ (Ormston and Webster 2008, p9). Perhaps because of this the Scottish Government has for many years made a commitment to address these issues. In recent years several new policy documents have been produced which acknowledge the increasing prevalence of alcohol problems among people as they age. However, the links between alcohol and cognitive impairment as people age are not well understood. This paper is based on a review of the literature, analysis of recent Scottish policy documents and two small research projects undertaken by the author. The first half of the paper discusses the links between alcohol use and dementia focusing on biological and social implications for individuals as they age. The second half of the paper examines current responses in Scotland to these different issues from individual, cultural and policy perspectives. Despite efforts in Scotland the needs of older and ageing individuals who drink problematically and experience alcohol-related morbidity are not sufficiently addressed.

Familial solidarity and the willingness to care in future: The point of view of grandchildren of people with dementia

Elisabeth Philipp-Metzen, Alzheimer’s Association Münster, Germany,

Dementia often has a remarkable effect on family life in household caregiving situations. A great deal of support is given from near and far in so-called “multi-generational families with multi locations”. The qualitative study presented here, supported by the Heinrich-Böll-Foundation in Berlin and with the supervision of Prof. Dr. Karl at the University of Kassel, focuses on the intergenerational relationships of the family members. The study is based on the perspective of applied gerontology which adopts the sociological life-world-oriented paradigm of Alfred Schütz. Current studies of the family-sociologist Nave-Herz (2004) show: "The multilocationalism of multiple generation families does not mean that the contact between the family members is broken off and neither is it an indication of a decrease in the emotional relationship and material support between the family generations". Also according to the Commission of the European Communities families play an important role in European society: “Families: The structure of which varies but which still constitute an essential part of European society“ (Commission of the European Communities, 2005). The findings of the most recent studies indicate that care situations induce both positive and negative changes for younger generations (Szinovacz, 2003). In the study presented here, the fifteen grandchildren had mainly positive experiences, e.g. because of the improvement in social responsibility. “Family cohesion” as part of the research construct “familial solidarity” came up as one of the most important experiences for a positive evaluation. Asked about their willingness to care in the future, the results show that all participants in the study were willing to be responsible for the well-being of the elderly in general, regardless of whether they experienced a positive family care giving situation or a difficult one. Balancing work and care giving and the costs involved are important issues, so the combination of family and professional care is the preferred scenario. A considerable amount of familial solidarity was found. It should be strengthened by community based interventions as recommended in the Report of the Second World Assembly on Ageing, in particular in context with dementia: “Promote solidarity among generations and mutual support as a key element for social development“ (United Nations, Madrid, 2002).

Self-understanding and dementia - A qualitative interview-based study of younger persons with Alzheimer’s dementia

Kjersti Wogn-Henriksen, HF Nordmøre og Romsdal, Norway,

Self-reflection is a basic characteristic of the human kind, particularly important when confronted with illness and challenging life situations – like dementia. Yet the capacity for fully understanding what is happening in the present and future may be challenged in the course of dementia. Some persons with dementia do relate to their illness, whereas others do not show full awareness their situation. Dementia care needs to listen to “the voice of the life- world” as well as “the voice of medicine”. What can we - through qualitative interviews - learn about how people with dementia think about themselves, their illness and situation? And how may their self-narratives and reflection change as dementia progress? This is a phenomenological, longitudinal study where 7 younger persons with AD are interviewed several times during 4 years of progressive dementia in order to learn more about individual dynamic cognitive and emotional process over time.

So far interviews have been conducted twice with each participant. Some preliminary findings from the analysis of the first interviews will be presented. Younger persons with dementia do not primarily seem to be passive victims of their destiny, but seem rather to be actively coping in different, individual ways. Dementia represents many complex issues for people to explore, worry about and reorganise themselves towards. People seem to relate to their situation with their individual coping style and degree and type of insight. Awareness and insight seem to be dynamic individual processes more than stable, dichotomized traits. Social, contextual as well as psychological conditions for awareness will be discussed.

‘My grandmother has dementia’: lived experience and information needs of adolescents whose grandparent has dementia

Els Steeman, Ghent University, Belgium,
Co-authors: T. Defloor, M. Grypdonck

Introduction: Information about dementia tailored to adolescents who are confronted with a grandparent with dementia is scarce. Adolescents are in the midst of their identity development, and the confrontation with a grandparent with dementia may be experienced as difficult. Tailor-made information is of importance to better understand and deal with the dementia of their grandparent, which in turn may positively support the relationship with the grandparent.

Goal: This study aimed to explore the lived experience and information needs of adolescents in confrontation with their grandparent with dementia and to develop a specific information tool.

Methods: We conducted a short survey among 746 high school students, and had in-depth interviews with 28 adolescents whose grandparent had dementia. The interviews were transcribed, coded and analysed according to the method of constant comparison.

Results: 11% of the questioned adolescents had a grandparent with dementia. From the survey as well as from the interviews we learned that these adolescents experience difficulty dealing with their grandparent with dementia. Especially when these youngsters want to treat their grandparent in a respectful way, they often feel uncomfortable. It’s difficult for them to get in contact with their grandparent. Strange behaviour of their grandparent may be experienced as frightening or annoying. Some adolescents clearly relate the behaviour to the disease, other adolescents do not. Despite the difficult contact, some adolescents experience pleasure in keeping contact with their grandparent. Somewhat surprising, only a minority of the adolescents indicated a need for information. However, the interviews revealed that many questions are present, but for which no answers are obtained or sought. Most adolescents made hardly any problem out of it at all. They often use humour to deal with the situation. Their parents are the most important source for information and their role model in dealing with dementia.

Conclusion: Although they do not always explicitly ask questions, adolescents do need information in dealing with their grandparent with dementia. Information should be practical, supporting the adolescent in respectfully communicating. Parents should be closely involved in informing and supporting these adolescents. Based on the results of the interview, a specific information booklet was developed.

The NeedYD study: How do caregivers of patients with young onset dementia perceive the period prior to diagnosis?

Deliane van Vliet, C. Bakker, M de Vugt, R. Koopmans, F. Verhey

Background: The literature suggests that dementia in early age (EOD) may lead to specific age related needs and a higher impact on patients and their informal caregivers than dementia in older age (LOD). Indications exist that it takes longer to receive a diagnosis in early compared with late onset dementia, which may cause feelings of frustration or insecurity. The objective is to gain insight in how caregivers of people with young onset dementia perceive the period prior to diagnosis.

Methods: The NeedYD-study is a 2-year prospective cohort study with five assessments at six month intervals. 200 dementia patients with onset of the disease before the age of 65 were recruited. Patients and caregivers were recruited from memory clinics and specialized day-care centers.

Preliminary results were obtained from qualitative interviews with 21 primary caregivers of young onset dementia patients. Outcomes were caregivers’ experiences and problems in the period prior to diagnosis. The available clinical records were checked for year of diagnosis, referral pathways and earlier diagnoses.

Results: The following problem areas were identified in the period prior to diagnosis: changes in the marital relationship, patients’ unemployment, cognitive deterioration, behavioral problems, denial/covering up deficits, not getting acknowledged, receiving a wrong diagnosis and negative experiences with professional care. All caregivers experienced problems in one or more of these areas. Eleven of them used terms such as ‘extremely difficult’ or ‘too long’ to describe this period, even three caregivers were on the verge of leaving their spouse. 66,7 % of caregivers suspected other causes than dementia or did not know what was wrong, 38,1% of patients received a wrong diagnosis and 28,6% of caregivers had to take initiative themselves to receive adequate help. Mean number of years between disease onset and diagnosis was 4,9 years, which is longer than comparable data in late onset dementia.

Conclusion: Preliminary results show that caregivers of young onset dementia patients encounter a considerable amount of problems and a longer period prior to diagnosis compared to late onset dementia. These findings underline the need for faster and more adequate help for this specific group.

Project of a national reference centre for patient with early onset Alzheimer’s disease

Florence Pasquier, (Lille, France), Didier Hannequin (Rouen, France), Bruno Dubois, (Paris, France)

The French Alzheimer’s disease (AD) programme 2008-2012 plans a particular measure for young patients with AD. The prevalence of early onset AD is not well known. According to the medical insurance, about 8.000 patients of less than 60 years of age are diagnosed with AD in France. Amongst them 1 to 2% may have a monogenic form of the disease with autosomal dominant transmission. Specific problems are met in young patients with dementia: the diagnosis is often delayed, because AD is widely considered as a disease of old age; misdiagnosis with psychiatric diseases is frequent; difficult professional, family (including heredity), and social problems are encountered; relatives have to be especially supported; most structures are inadequate to welcome these young patients. Thus, the aim of this national reference centre for young patients with AD (and related disorders) is to improve the diagnosis (including the delay), and the management of these patients and their family. This centre will have to write and spread out guidelines for all professionals concerned by young out- and in-patients, to be implicated in national and international networks of associations and institutions and research programmes (epidemiologic, basic, genetic, as well as clinical) and make available for all patients clinical and pharmaceutical studies. An emphasis is put on training for all medical and social professionals.



Last Updated: Thursday 17 December 2009