Exploring the Service and Support Needs of Families With Early-Onset Alzheimer’s Disease

Abstract

Although often cast as a disease of later life, a growing number of people are being diagnosed with Alzheimer's disease in their 50s and 60s. Early-onset Alzheimer's disease (EOAD) poses special challenges and needs for individuals and their caregivers, such as employment and access to services. In this cross-sectional study, the researchers surveyed 81 (N = 81) family caregivers to individuals with EOAD to identify service and support usage and need. Descriptive analyses revealed that families utilized a range of formal services (eg, adult day) and informal support from family and friends. In terms of challenges and needs, participants indicated that they struggled most with employment, benefits, and financial issues. Although most caregivers felt that they were coping well, they also indicated that their needs were not well understood by service providers and the public. These findings highlight the need to better understand and respond to the specific issues surrounding EOAD.

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

“…CG Lewy Body Dementia  2011 / USA [56]Galvin et al962 CGs; 87,9% female; 40,6% spouse; mean age = 55.9 yearsWeb-based surveyFunctional, behavioral and affective disturbances burdenAreas: ADL, IADL, paid services used and requested services by CGs.yesNo, questionnaire developed for the studyCG  2015/UK [57]Killen et al122 CGs; 89% female; 17.6% spouseWeb-based surveyInformation and support needsTen short questions focused on past support and information experiences, difficulties encountered that could benefit from information and support, and appropriate topics for inclusion in future resource development.yesNo, questionnaire developed for the studyCG + patients AD and vascular dementia  2001/ USA [58]England92 filial CGs; 72.8% female; mean age = 53.45 yearsFace-to-face interviewsLearning and resource needsChecklist of learning and resource needs: prioritization of a list of 15 information requests and prioritization a list of ten resource requests.yesNo, questionnaire developed for the studyCG3) Early-onset Dementia (EOD) 2012/ Norway [22]Rosness et al45 informal CGs68.9% femaleSelf-administeredBurden and needsA 20-item questionnaire (Care-EOD) assessing the burden and needs. Six-point rating scale.yesNo, questionnaire developed for the studyCG 2014/ USA [59]Gibson et al81 CG; 76.5% female; 69.2% spouseWeb-based surveyService and support needsAreas: caregiving obligations, utilization of services, perceived importance of services, employment status, need for and access to financial services and benefits, and perceived understanding of the experiences of CGs by the public and by service providers.yesNo, survey developed for the studyCG4) Dementia 1995/ UK [60]Philp et al114 informal CGs; 86% female; 22.8% spouse; mean age = 80.7 yearsFace-to-face interviewsService needsList of locally available services: frequency of use, number of hours of support a week.yesNo, instrument developed for the studyCG 1999/ UK [61]Turner et al30 CGs; 60% female; 37% spouse; 2/3 < 65 yearsFace-to-face interviewsTraining needsFour areas (19 items): practical advice, information, coping with caring, coping with the person with dementia.…”

Experiences and needs of spouses of persons with young‐onset frontotemporal lobe dementia during the progression of the disease

“…The reduced working time or disability pension had a marked influence on the family economy. That employment benefits and financial issues are central to carers of YOD is underlined in another study .…”

Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review

“…Roach & Drummond, 2014;Shnall, 2015;Svanberg, Spector, & Stott, 2011;Thompson, 2011), accommodate changing care needs along the disease trajectory (Bakker et al, 2013;Bakker et al, 2010) and need to seek financial and legal advice as employment is discontinued and spouses give up work to become the main caregiver or take on work to compensate for lost income (Alzheimer's Society, 2015;Chaplin & Davidson, 2016;Picard, Pasquier, Martinaud, Hannequin, & Godefroy, 2011;Ritchie, Banks, Danson, Tolson, & Borrowman, 2015). The need for age-appropriate service design for people diagnosed with YOD has been discussed extensively in a number of comprehensive, non-systematic literature reviews of YOD (Baptista et al, 2016;Beattie et al, 2002;Cabote, Bramble, & McCann, 2015;Millenaar et al, 2016;Richardson et al, 2016;Sansoni et al, 2016;Sansoni et al, 2014;Westera et al, 2014), reports (Austin A, 2016;Brown et al, 2012;Clayton-Turner et al, 2016) and papers across various disciplines (Armari, Jarmolowicz, & Panegyres, 2013;Bakker et al, 2014;Bakker et al, 2010;Ducharme, Kergoat, Antoine, Pasquier, & Coulombe, 2014a;Ducharme et al, 2014b;Gibson et al, 2014;Hvidsten et al, 2014), but there is little evidence of 'what works' in order to inform service design and delivery. The aim of this systematic review was to identify service outcomes that were perceived as important and effective by people living with YOD and their caregivers.…”

“…Their support needs differ considerably from those of people with dementia in later years (AM Beattie, Daker-White, Gilliard, & Means, 2002;Sansoni et al, 2016;Sansoni et al, 2014;Thompson, 2011;Tyson, 2007;Westera et al, 2014) as they still have comparatively high levels of physical fitness and are not wellmatched to join more sedentary services designed for older age groups (Pamela Roach, Drummond, & Keady, 2016;Tolhurst, Bhattacharyya, & Kingston, 2014). They also need to negotiate changing family dynamics with a particular focus on children and teenagers (Chow, Pio, & Rockwood, 2011;Gibson, Anderson, & Acocks, 2014;Hutchinson, Roberts, Daly, Bulsara, & Kurrle, 2016;Johannessen, Bruvik, & Hauge, 2015;Lockeridge & Simpson, 2013;Morhardt et al, 2015;P. Roach & Drummond, 2014;Shnall, 2015;Svanberg, Spector, & Stott, 2011;Thompson, 2011), accommodate changing care needs along the disease trajectory (Bakker et al, 2013;Bakker et al, 2010) and need to seek financial and legal advice as employment is discontinued and spouses give up work to become the main caregiver or take on work to compensate for lost income (Alzheimer's Society, 2015;Chaplin & Davidson, 2016;Picard, Pasquier, Martinaud, Hannequin, & Godefroy, 2011;Ritchie, Banks, Danson, Tolson, & Borrowman, 2015).…”