Social supports and mental health needs of caregivers of those with early-onset dementia

Trauma and its aftermath are the result of many experiences. Early-onset dementia (EOD) and other dementias are devastating to the person and to his or her family members (Alzheimer's Association, 2006). This mixed methods, sequential, exploratory study used phenomenological research methods supplemented by three brief psychological instruments, Impact of Event Scale-Revised, Orientation to Life Questionnaire, and the Posttraumatic Growth Questionnaire to explore the lived experience of caregivers who provide care to those with EOD. Purposive sampling was used to recruit 20 participants who were interviewed by telephone, email correspondence, and face-to-face meetings. Interviews included open-ended questions and quantitative measures. Relevant statements that contributed to the development of themes were identified and three themes were revealed: diagnostic issues (e.g. difficulty obtaining correct diagnosis, extended length of time to get diagnosis, caregiver's observations being discounted by medical care provider), psychological issues (e.g. ambiguous grief, helplessness, fear, depression, lethality) , and caregiver role issues (e.g. maintaining dignity of affected individual, advocacy, end-of-life decisions). In addition, results revealed that many caregivers experienced anticipatory trauma, symptoms of posttraumatic stress disorder, and post-traumatic growth. Finally, participants identified areas of change by professionals that would be helpful to them. The findings from this study can help professionals support caregivers in the unique challenges they encounter in caring for those with EOD.