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Examining the Experiences of Caregivers During the Diagnosis of Alzheimer’s Disease and Related Dementias

Year: 2010
Type: article
Study design: Observational Study
Abstract: Memory loss disorders, such as Alzheimer's disease and other dementias, are difficult to diagnose and individuals and families can wait years to receive a definitive diagnosis.Without a diagnosis, questions arise as to when these individuals will be provided information about their condition and whether they will have access to disease-specific resources, such as those offered through the Alzheimer's Association.The majority of the existing research that has been conducted on the diagnostic process for dementia has focused specifically on exploring physician attitudes and practices.As such, little is known regarding the needs of individuals with dementia and their family caregivers following this often devastating diagnosis.In this study, the researchers examined caregivers' experiences with the diagnostic process and with accessing information and community resources.A convenience sample was drawn from caregivers identified through the Alzheimer's Association (N=106).Participants completed either a 25-item written or online version of the questionnaire.A cross-sectional survey design was utilized to investigate the experiences of families during and following the diagnostic process for dementia.Survey items focused on the following: demographic and contextual variables; characteristics surrounding the diagnosis including the type of diagnosis, support service knowledge and use of community resources; and the caregiving role.The results of this study indicated that the majority of individuals were iii receiving diagnoses within one year of pursuing a memory loss diagnosis; however, caregivers felt they were not adequately supported at the time of diagnosis, nor up to one year following diagnosis.Caregivers stated that they were not provided enough information at the time of diagnosis about the disease or how to provide care for an individual with memory loss.A year following diagnosis, the majority of caregivers still felt they did not understand the disease or how to provide care for an individual with memory loss, nor were they aware of what support services were available within their communities.Results of this study indicate that more could be done during the diagnostic process to help caregivers understand dementia and to learn about and connect with available support supports that can provide education and care assistance to dementia caregivers.It may be the case that models of care that provide more comprehensive services at the time of diagnosis and in the months and years following diagnosis yield better outcomes for family dementia caregivers.opportunity for me to recruit subjects from their programs.Also thank you to all the participants who gave of their time freely in order for me learn about their experiences as dementia caregivers.vi
Language: English
Field: Medicine
Open Access status: green
OpenAlex ID: W2281992101
FWCI:
Cites: 94
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Related to: 10