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

Bruinsma, Jeroen; Peetoom, Kirsten; Bakker, Christian; Boots, Lizzy; Verhey, Frans R.J.; Vugt, Marjolein E. de

doi:10.1080/13607863.2020.1857697

Cited by 27 publications

(51 citation statements)

References 43 publications

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“…This feasibility study concerns the final step in the developmental process and evaluated the expectations and perceptions of spouses regarding tailored content on FTD. Tailored content was developed using data from focus group discussions ( Bruinsma et al, 2020 ), and in close collaboration with an advisory committee comprising experts, healthcare professionals, and spouses of persons with FTD. To illustrate, the tailored content consisted of videos and personal stories reflecting the perspective of spouses caring for a person with FTD at home.…”

Section: Methodsmentioning

confidence: 99%

“…Establishing an FTD diagnosis may last up to 6.1 years, compared to 4.4 years in young-onset dementia in general ( van Vliet et al, 2013 ; Draper et al, 2016 ). The delay in diagnosis is problematic as it impedes the ability of spouses to adapt to the caregiving role because a diagnosis helps with understanding the changes in their spouse with FTD ( Bruinsma et al, 2020 ).…”

Section: Introductionmentioning

confidence: 99%

“…In the phase after obtaining the diagnosis, spouses of persons with FTD often feel socially and professionally unsupported ( Bruinsma et al, 2020 ; Rosness et al, 2008 ). For example, they experience that family and friends trivialize the severity of symptoms.…”

Section: Introductionmentioning

confidence: 99%

“…For example, they experience that family and friends trivialize the severity of symptoms. Additionally, they often feel that healthcare professionals struggle with providing advice on coping with symptoms of FTD ( Bruinsma et al, 2020 ). The majority of available support for caregivers is designed with the elderly and in particular Alzheimer's dementia in mind, resulting in a mismatch between support and the needs of spouses of persons with FTD ( Bruinsma et al, 2021a ; Nunnemann et al, 2012 ).…”

Section: Introductionmentioning

confidence: 99%

“…The majority of available support for caregivers is designed with the elderly and in particular Alzheimer's dementia in mind, resulting in a mismatch between support and the needs of spouses of persons with FTD ( Bruinsma et al, 2021a ; Nunnemann et al, 2012 ). Therefore, spouses postpone the initiation of professional care and support services ( Bruinsma et al, 2020 ). This is problematic because support can facilitate adaptation to the caregiving role.…”

Section: Introductionmentioning

confidence: 99%

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Tailoring the web-based ‘Partner in Balance’ intervention to support spouses of persons with frontotemporal dementia

Bruinsma

Peetoom

Boots

et al. 2021

Internet Interventions

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Frontotemporal dementia (FTD) typically starts before the age of 65 years, and symptoms differ from other dementias (e.g. Alzheimer's dementia). Spouses are often caregiver and experience difficulty coping with the profound changes in personality and behavior accompanying FTD. Most interventions available to these spouses do not match their need for tailored and flexible psychosocial support. Therefore, tailored content for spouses of persons with FTD was recently incorporated in the proven effective and web-based Partner in Balance intervention. Methods This feasibility study prospectively evaluated the tailored Partner in Balance content for spouses of persons with FTD. Spouses followed the 8-week intervention, and qualitative and quantitative measures were used to evaluate expectations and barriers prior to participation and aspects of usability, feasibility, and acceptability of content. Additionally, effects were explored regarding caregiver self-efficacy, sense of mastery, stress, depression and anxiety. Results Twenty-seven spouses caring for a spouse with FTD at home started the intervention. Eventually, 20 completed the intervention (74.1%). Partner in Balance matched the expectations of participating spouses and helped them to find a better balance between caregiving and personal life, acquire more peace of mind, and facilitated coping with behavioral and communication difficulties. Before participation, time restraints were identified as a potential barrier, but afterwards spouses positively evaluated the flexibility of the web-based approach that allowed them to participate at a convenient time and place. They valued the recognizability of the videos and narrative stories on FTD. Post-intervention, spouses qualitatively felt more confident, more at ease, and strengthened as a caregiver. Quantitatively, levels of self-efficacy, anxiety and depression significantly improved. Conclusions Partner in Balance is a usable, feasible, and acceptable intervention for spouses caring for a spouse with FTD at home. Healthcare organizations could consider adopting Partner in Balance in their daily practice to offer flexible and tailored support to spouses.

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Section: Methodsmentioning

confidence: 99%