Frontotemporal dementia

Information for Parents with Young Children and Teens

RDS supports people affected by 7 of the rare dementias including carers and bereaved carers. These are: Familial Alzheimer’s disease (FAD), frontotemporal dementia (FTD), familial frontotemporal dementia (fFTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), Lewy body dementia (LBD) and Young-onset Alzheimer’s disease (YOAD).

FTD is often thought to be a relatively rare form of dementia, though this perception may be due in part to the fact that it is not yet widely understood and may therefore be under-diagnosed. For this reason, many people with FTD and their families will experience a long and difficult journey before receiving a diagnosis and access to appropriate advice and support.

A non-profit organisation dedicated to raising awareness and providing support to people living with frontotemporal dementia (FTD), either those with a diagnosis and their families, friends, and carers.

Disease Overview : What is Frontotemporal Degeneration (FTD)? FTD is the most common form of dementia for people under age 60. It represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. FTD is also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick’s disease.

FTD talk provides up-to-date information and helpful factsheets about FTD and variants. The site also blogs about research, which aims to develop new biomarkers for FTD and to support people affected by FTD throughout their journey.

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.
Tookey, S. A., Greaves, C. V., Rohrer, J. D., & Stott, J. (2021). Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review. Dementia, 20(8), 3032–3054.

This critical constructionist case study of ‘Leonard,’ a man with frontotemporal dementia living on a special care unit predominantly populated by people with Alzheimer’s disease and related dementias, explores how healthy others’ perceptions of the prevailing physical and psychosocial environment were influenced by Leonard’s behaviour which, in turn, was influenced by people’s perceptions of him as a ‘problem’. Data were obtained through participant observations, individual interviews with staff and residents, and focus groups with family members and nursing staff.
Koehn, S. D., Kozak, J.-F., & Drance, E. (2012). ‘The problem with Leonard’: A critical constructionist view of need-driven dementia-compromised behaviours. Dementia, 11(6), 725–741.

This questionnaire disclosed striking differences between patients with FTD and AD, but only stereotypic behaviour, changes in eating preference, disinhibition, and features of poor social awareness reliably separated the groups. The patients with fv FTD and semantic dementia were behaviourally very similar, reflecting the involvement of a common network, the ventral frontal lobe, temporal pole, and amygdala. Dysexecutive symptoms and poor self care were found to be affected by the severity of the disease, reflecting perhaps spread to dorsolateral prefrontal areas relatively late in the course of both FTD and AD. This questionnaire may be of value in the diagnosis and the monitoring of therapies. S Bozeat , et al. PMID: 10896690 PMCID: PMC1737062 DOI: 10.1136/jnnp.69.2.178

This paper reviews and discusses current studies utilising non-pharmacological approaches, exposing the clear need for more rigorous methodologies to be applied in this field. Finally, a successful randomised controlled trial helped reduce behaviours of concern in dementia, and through implementing participation in tailored activities, the FTD-specific Tailored Activities Program (TAP) is presented. Crucially, this protocol has scope to target both the person with FTD and their carer. This paper highlights that studies in this area would help to elucidate the potential for using activities to reduce characteristic behaviours in FTD, improving quality of life and the caregiving experience in FTD. Claire M O'Connor et al. PMID: 29213832 PMCID: PMC5619510 DOI: 10.1590/S1980-57642013DN70200002