In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers’ education needs, barriers, and preferences

Abstract

BackgroundMost patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology.MethodsWe aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes.ResultsWe interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources.ConclusionsThese findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and describe diverse cognitive, functional and behavioral symptoms that lead to dementia, and recognize the benefits of early detection in accessing information regarding multi-modality management and care; 2.) Improved methods are needed for PCPs to detect and manage cognitive and behavioral changes, as well as mechanisms that facilitate the busy PCP, either directly or via referral, to provide caregiver information, education, support, and services. The critical relationship between caregivers and PCPs should not be circumvented but should be facilitated to provide more effective guidance regarding dementia caregiver needs.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-016-0338-7) contains supplementary material, which is available to authorized users.

Caring for Self while Caring for Others: Impact of Wearable Health Monitoring Devices on Self-care of Family/Friend Caregivers of Individuals Living with a Dementia

“…Some caregivers expressed concern that the time required to use the iWellness platform and Fitbit would take them away from their caregiving duties. This finding is consistent with previous research that reports caregivers often describe themselves as being too busy or overwhelmed to seek supports to assist them in their roles [39]. The time required to access resources or learn new skills often overshadows any potential benefits, such as reduced frustration and increased caregiving efficiencies.…”

Family carers' perspectives of managing activities of daily living and use of mHealth applications in dementia care: A qualitative study

“…A recent literature review identified the needs associated with functional care as one of the main types of information and knowledge needs of carers of people with dementia (McCabe, You, & Tatangelo, 2016). Similar to our study, carers have previously indicated that they received inadequate information and faced difficulties in finding credible and reliable information (Peterson, Hahn, Lee, Madison, & Atri, 2016). Health literacy and eHealth literacy are essential skills for finding credible and reliable information (Keleher & Hagger, 2007;Norman & Skinner, 2006).…”

“…However, they reported some challenges in communicating with healthcare professionals. Recent studies have also reported ineffective communication between health professionals and informal carers of people with dementia (Caswell, Pollock, Harwood, & Porock, 2015;Peterson et al, 2016). This is, in part, due to health professionals having a poor understanding of the problems experienced by carers and, therefore, simply disregarding their problems (Manthorpe et al, 2013).…”

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

“…Topics: helpful interventions or other treatments to reduce CG distress, sources of stress and coping/management strategies. 2016/Thailand [92]Griffiths et al30 CGs; 24 female; 12 spouseSemi-structured interviews. Topics: problems and needs of CGs who help older people with dementia to do activities of daily living. 2016/USA [93]Peterson et al27 CGs; 19 female; eight spouse; mean age = 58.5Semi-structured interviews. Topics: caregiving characteristics, care recipient symptoms, information regarding diagnosis, care issue and strategies (trigger, previous sources, most helpful sources, barriers, expectations and preferences), preferred learning methods and setting, and the use of technology. 2016/USA [94]Samson et al32 African American CGs; 28 female4 focus group.…”