Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review

Abstract

Introduction Frontotemporal dementia (FTD) is one of the most common types of dementia in persons younger than 65 years of age. Diagnosis is often delayed due to slow, gradual decline and misinterpretation of ‘non-typical’ dementia symptoms. Informal carers of people with FTD experience greater levels of overall burden than carers of people with other forms of dementia. The aim of this systematic review was to describe the subjective experience of being an informal carer of a person with FTD and to identify the specific needs, coping strategies and helpful support resources of this carer population. Methods Four electronic databases were used to search for published literature presenting experiences of carers of people with FTD between January 2003 and July 2019. Search strategy followed PRISMA guidelines. Findings were analysed using framework analysis, employing five stages of analysis to develop a coding index and thematic framework that included key aspects of the carer experience, which were grouped into themes and presented in a narrative format. Results 1213 articles were identified in total. Twelve studies were included in the final synthesis of the review. Six themes were identified: ‘Challenging road to and receipt of diagnosis’, ‘relationship change and loss’, ‘challenging experiences in caring’, ‘positive experiences and resilience’, ‘coping’ and ‘support needs’. Discussion Findings highlight an increased need for carers of people with FTD to receive support during the pre-diagnostic stage, including support to manage symptoms. Further research should explore relationship changes and loss amongst carers to inform approaches for carer support. In conclusion, the lack of knowledge and unique needs of carers highlight the importance of public awareness campaigns and healthcare professional education to support carers with FTD symptom impact.

Exploring experiences and needs of spousal carers of people with behavioural variant frontotemporal dementia (bvFTD) including those with familial FTD (fFTD): a qualitative study

“…Psychosocial interventions should be offered to support patients and families to cope with the specific challenges of bvFTD. Psychosocial interventions should include managing challenging behavioural symptoms, learning adaptive psychological coping strategies, engaging in FTD carer support groups as well as psychosocial support relating to grief, loss and processing the relationship change [ 11 , 37 – 40 ].…”

Intergenerational family relationships and the impact of behavioural variant frontotemporal dementia (bvFTD): a qualitative longitudinal study

“…While some advances in diagnostic practice and early intervention have occurred since this study was completed, it remains evident that bvFTD is poorly understood, early diagnosis is challenging, and further development of support and interventions for the person and their family are required (Tookey et al, 2021(Tookey et al, , 2022. Such developments are particularly needed in light of the deleterious impact of the measures instigated during the COVID-19 pandemic on families living with dementia.…”

Behind closed doors. A case study exploring the lived experiences of a family of a person with the behavioral variant of frontotemporal dementia

“…This complicates a timely diagnosis and results in high levels of pre-diagnostic uncertainty in family members ( Van Vliet et al, 2011 ). Obtaining a diagnosis can help family members to understand the changes in their relative with the behavioral variant of frontotemporal dementia ( Bruinsma, Peetoom, Bakker et al, 2020 ; Tookey et al, 2021 ). Additionally, for family members the diagnosis often confirms the irreversibility of symptoms ( de Vugt & Verhey, 2013 ).…”

“…Additionally, for family members the diagnosis often confirms the irreversibility of symptoms ( de Vugt & Verhey, 2013 ). This can lead to feelings of grief in anticipation of losing their relative to the symptoms ( Tookey et al, 2021 ).…”

“…For family members, disclosure of a the diagnosis often marks the beginning of identifying themselves as caregivers ( Bruinsma, Peetoom, Bakker et al, 2020 ; de Vugt & Verhey, 2013 ). At a young age, it is often a spouse who becomes the primary caregiver ( Tookey et al, 2021 ). This can cause shifts in the distribution of responsibility and changes in interpersonal relationships ( Caceres et al, 2016 ; Kaizik et al, 2017 ).…”