Abstract
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. MethodsThis 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. ResultsTwenty-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. ConclusionsPartner 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.
Highlights
In 70-80% of the persons with frontotemporal dementia (FTD) the symptoms start before the age of 65 years (Knopman and Roberts, 2011; Rabinovici and Miller, 2010)
The other seven spouses had a coach without a preexisting therapeutic relationship from Alzheimer Centre Limburg
Most of the caregiving spouses cared for a spouse with the behavioral variant of Frontotemporal dementia (FTD), fol lowed by semantic dementia (SD; n = 6), and primary progressive
Summary
In 70-80% of the persons with frontotemporal dementia (FTD) the symptoms start before the age of 65 years (Knopman and Roberts, 2011; Rabinovici and Miller, 2010). Given the young age of onset, spouses often perform the role of primary caregiver (Bakker et al, 2013) This is challenging for most spouses because they are likely to be employed (Caceres et al, 2016; Nunnemann et al, 2012), and children may still live at home (Kaizik et al, 2017). Another challenging factor is that persons with FTD are often in good physical condition and the symptoms differ from those of other dementias. The delay in diagnosis is problematic as it impedes the ability of spouses to adapt to the caregiving role because a diagnosis helps with under standing the changes in their spouse with FTD (Bruinsma et al, 2020)
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