The impact of parental young onset dementia on children and young people's educational careers

Abstract

It is well established that having a parent with any illness or disability can have an adverse effect on individuals’ experiences of education and on their educational progress. Advances in medical knowledge are leading to more people under 65 being diagnosed with young onset dementias and, concomitantly, to more children and young people who are in education having a parent with this diagnosis. Hardly any research has asked these young people directly about their experiences, but the limited evidence suggests that there will likely be significant emotional, mental and psychological damage with enduring impact on their lives. This article, drawing on findings from a unique narrative, auto/biographical study involving 24 British 6 to 31‐year‐olds, focuses on the consequences of parental young onset dementia for educational careers. These dementias are untimely progressive terminal illnesses with unpredictable trajectories and timelines, throughout the course of which physical, cognitive and emotional functions and abilities are inexorably lost. Participants’ experiences show that living with a parent with young onset dementia, whilst negotiating the education system, can be extremely hard. Difficulties are exacerbated by the condition's distinctive characteristics, the current lack of any cure and anticipatory, pre‐death grief. Lack of public awareness and understanding, both of young onset dementias and of dedicated resources and support services, also result in many feeling isolated and ignored. We make suggestions for positive provision and actions that educational institutions can make to begin to meet the particular needs of these young people.

‘They simply do not understand’: a focus group study exploring the lived experiences of family caregivers of people with frontotemporal dementia

“…According to caregivers there is only limited appropriate support available and healthcare professionals often have little knowledge about FTD and the challenges that caregivers face. These negative experiences with healthcare will lower the confidence that caregivers have in professional care and may increase the risk for delay in initiation of care and support services (Rabanal, Chatwin, Walker, O'Sullivan, & Williamson, 2018;Sikes & Hall, 2018). Particularly in the behavioral variant of FTD this is problematic given the high levels of burden and distress experienced by caregivers (Mioshi et al, 2013).…”

“…Particularly in the behavioral variant of FTD this is problematic given the high levels of burden and distress experienced by caregivers (Mioshi et al, 2013). Therefore, specialized support services and educational programs on FTD for healthcare professionals seem needed to improve postdiagnostic care in FTD (Rabanal et al, 2018;Sikes & Hall, 2018).…”

Epidemiology of early onset dementia and its clinical presentations in the province of Modena, Italy

“…The term “early onset dementia” (EOD) indicates dementia with symptom onset before the age of 65, regardless of the underlying dementia syndrome. EOD has a significant impact on patients and families, which may include young children, 1 as well as on employment and income 2 . General dementia care networks are frequently unable to respond to the specific needs of patients with EOD, since they are tailored to older patients with different social and family situations 3 .…”

Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence

“…Worry, sadness, and gratitude comprised attributes of anticipatory loss commonly seen in these families. 19,20 Worry about future loss was balanced with gratitude regarding current good health. Anticipatory loss sometimes acted as an impetus for family members to connect and enjoy their time together.…”