When Dementia is in the House: Needs Assessment Survey for Young Caregivers

Abstract

Frontotemporal dementia (FTD) is a neurodegenerative illness with early onset, before the age of 65. This dementia syndrome has a more rapid decline than Alzheimer's disease (AD) [1][2][3] . Symptoms of FTD include marked behavioral, frontal executive, language, and motor changes. Caregivers at home with the patient often include school age children. There are currently no resources for older children, or for parents to know how to discuss the illness and its implications with their younger children.Previous studies have demonstrated that caregiving for a host of physical and mental illnesses as a child can have negative effects, including restrictions on peer relationships, health problems, educational achievement and emotional stability 4,5 . Luscombe et al. showed increased adverse psychological and physical effects, inversely related to age, in young carers of young-onset dementia patients 6 . Gelman and Greer suggested that children providing care for a younger dementia patient, as is often the case in FTD, are vulnerable because the experience occurs during key developmental years and can lead to feelings of loss and anxiety over the cognitive decline of the parent, shame from the parent's behavior, confusion caused by parent-ABSTRACT: Objective: To learn more about the needs and experiences of young carers for patients of frontotemporal dementia (FTD) in order to create a relevant support website for young caregivers to dementia patients. Methods: Two focus groups were held with a total of fourteen young carers aged 11-18. The data corpus was collected through a semi-structured interview facilitated by a medical journalist who had prior experience as a caregiver to a patient with FTD. The transcripts were narrowed to a dataset for descriptive analysis using a coding scheme to reveal the main themes of their responses. Results: Seven overlapping theme areas were: emotional impact of living with a parent with FTD, caregiving, coping, symptoms, diagnosis, relationships, and support. Based on the participantsr esponses, a website was launched providing supportive information and counsel for young carers. Conclusion: Young carers saw the experience of caring for a parent with early-onset dementia as positive overall, but identified opportunities for professionals to assist them in overcoming stigma and the challenge of balancing childhood and adolescent development within this context. RÉSUMÉ: Présence de démence au domicile : enquête sur l'évaluation des besoins des soignants qui sont jeunes. Objectif : Le but de l'étude était d'en apprendre davantage sur les besoins et les expériences des soignants qui sont jeunes et qui aident aux soins de patients atteints de démence frontotemporale (DFT) afin de créer un site Internet de soutien qui soit pertinent pour les soignants qui sont jeunes et qui prennent soin de patients qui sont déments. Méthode : Deux groupes de discussion composés en tout de 14 jeunes se sont réunis pour en discuter. Les données a été recueillies au moyen d'une entrevue semi-structurée dont l...

Young carers: growing up with chronic illness in the family - a systematic review 2007-2017

“…Apart from these negative effects, other authors confirm that young carers reach an early maturity [5,13,15,26] and greater independency [15].…”

“…This includes the emotional and practical support for other members of the family [5,14,15,19,21,[23][24][25][26][27][28]. Two of the included studies developed a categorical system from their available data [13,19].…”

“…The children and adolescents do not only identify this shift in the parental structure but, above all, they acknowledge it; some of them develop a particularly close relationship, not to say a partnership, with the healthy parent. It is therefore not surprising that these children and adolescents want to protect the healthy parent and do not verbalize their own needs and worries [26,32]. According to their relationship towards the mentally ill parent, they even suppress their own needs as they recognize the changes in the personality and behavior of the parent.…”

“…According to their relationship towards the mentally ill parent, they even suppress their own needs as they recognize the changes in the personality and behavior of the parent. Thus the communication from the children's perspective becomes one-sided, and the relationship is increasingly characterized by compassion [26,32]. In the Grounded Theory study by Mauseth & Hjalmhult [28], which examines the experiences of adolescents with a parent suffering from MS, it was found that the children's successful internal conflict with the family's situation depends greatly on the openness with which the parents confront their own illness, on the communication within the family and on the information about the illness itself.…”

“…Accordingly, they feel guilty and consequently remain mentally concerned about the family once they go their own way. Young carers feel guilty if they lose patience with their ill parent [13,26], if they think that they cannot provide sufficient help for their ill parent [28] or if they perceive that other people are prepared to take on more tasks [29]. Again, others who grow up with a mentally ill parent are confronted with the accusation of not looking after him/her enough, which they then experience as upsetting [14].…”