Young Children in Early-Onset Alzheimer’s Disease Families: Research Gaps and Emerging Service Needs

City University of New York, NY 10075, USA.
American Journal of Alzheimer s Disease and Other Dementias (Impact Factor: 1.63). 02/2011; 26(1):29-35. DOI: 10.1177/1533317510391241
Source: PubMed


Early-onset Alzheimer's disease (EOAD), defined as affecting those under age 65, afflicts between 200,000 and 500,000 people in the US. EOAD tends to be a fast-progressing and aggressive form of AD. There is a beginning body of research exploring EOAD patients' experience and needs, as well as that of their primary family caregivers, often spouses. However, there has been very little written about the experience and needs of EOAD patients' children, who because of the early onset, and increasing postponement of childbearing, may be latency-aged or in their early teens. This paper reviews existing and related literature in this area, and illustrates the psychosocial impact on children using the case of a 50 year-old father diagnosed with AD and his 16 year-old daughter and 11 year-old son. The need for increased research and program development to address these children's needs is discussed.

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Available from: Caroline Gelman, Sep 08, 2015
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    • "In our sample, the majority of caregivers were women, without significant differences between the number of spouses and sons. This is consistent with findings already reported in the literature.36,37 "
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    ABSTRACT: Background Alzheimer’s disease (AD) causes considerable distress in caregivers who are continuously required to deal with requests from patients. Coping strategies play a fundamental role in modulating the psychologic impact of the disease, although their role is still debated. The present study aims to evaluate the burden and anxiety experienced by caregivers, the effectiveness of adopted coping strategies, and their relationships with burden and anxiety. Methods Eighty-six caregivers received the Caregiver Burden Inventory (CBI) and the State-Trait Anxiety Inventory (STAI Y-1 and Y-2). The coping strategies were assessed by means of the Coping Inventory for Stressful Situations (CISS), according to the model proposed by Endler and Parker in 1990. Results The CBI scores (overall and single sections) were extremely high and correlated with dementia severity. Women, as well as older caregivers, showed higher scores. The trait anxiety (STAI-Y-2) correlated with the CBI overall score. The CISS showed that caregivers mainly adopted task-focused strategies. Women mainly adopted emotion-focused strategies and this style was related to a higher level of distress. Conclusion AD is associated with high distress among caregivers. The burden strongly correlates with dementia severity and is higher in women and in elderly subjects. Chronic anxiety affects caregivers who mainly rely on emotion-oriented coping strategies. The findings suggest providing support to families of patients with AD through tailored strategies aimed to reshape the dysfunctional coping styles.
    Full-text · Article · Jul 2014 · Neuropsychiatric Disease and Treatment
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    • "It is important that they express thoughts, feelings, and perceptions (Allen et al., 2009; Svanberg et al., 2010; Gelman and Greer, 2011; Johannessen, 2012). Studies from Europe show that, with a few exceptions, there are no structured services for the children of persons with young-onset dementia (Skovdal et al., 2007; Gelman and Greer, 2011). One reason might be that in many countries the recommendations for the provision of existing healthcare services have not been established to meet the specific needs of individuals, but are based on categories of people (Beattie et al., 2002), such as older people or people with disabilities. "
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    ABSTRACT: Background: There are few studies of young persons (<65 years old) with dementia, and the situation of their children has been a neglected research field. The aim is explore how adult children of a parent with young-onset dementia have experienced the development of their parents' dementia and what needs they have for assistance. Method: Qualitative interviews with 14 informants (aged 20-37 years; 12 daughters, 2 sons) during 2011 were conducted and analyzed thematically. Results: The informants experienced great burdens and felt neglected during the development of their parents' dementia, both by their family and by health and social services. They emphasized a need to be seen as individuals, with their experiences, feelings, and personal needs for assistance. The stresses experienced during the development of parental dementia seemed to increase conflicts in the family. There were variations in reactions between children, depending on age, gender, family structure and relationships, responsibilities, personal relations with both parents, and whether there was an adult primary caregiver. The length of time living together with the parent with dementia seemed to increase the stress and burden to the children. They expressed a great need for information and support. Conclusion: The findings strengthen the notion of the need for family-oriented support, combined with person-centered care for the children according to their needs. In addition, group meetings and contact with other young people in the same stage of life could be of interest for some.
    Full-text · Article · Jan 2014 · International Psychogeriatrics
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    • "Research on the impact of a parent with YOD is scarce (van Vliet et al., 2010b; Gelman and Greer, 2011). The few existing studies indicate that caring for a parent with YOD may be a significant stressor (Allen et al., 2009, Svanberg et al., 2010; Gelman and Greer, 2011). One study showed that a third of children in this situation suffered from mood disorders and more than half of the children scored above the cut-off for high burden levels (Svanberg et al., 2010). "
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    ABSTRACT: Background: Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs. Methods: Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes. Results: The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services. Conclusion: In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.
    Full-text · Article · Nov 2013 · International Psychogeriatrics
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