Purpose: Dementia is the major cause for disability and dependence in older people and associated with considerable psychological burden. The aim of this study was to determine the feasibility, acceptability and preliminary efficacy of Dignity Therapy, a brief psychotherapeutic intervention to enhance dignity and reduce psychological burden, in patients with early stage dementia and in their families or close friends.Materials and methods: In this randomized, waitinglist-controlled clinical trial a total of 54 patients with new diagnosis of early stage dementia and 54 study partners (spouses: n = 37; relatives: n = 14; close friends: n = 3) were randomly assigned to immediate treatment (n = 28) or delayed treatment (n = 26) after 3 months waiting. The main outcomes were feasibility: proportion of screened and invited patients who consented participation; Acceptability: number of drop-outs, and satisfaction with treatment; Efficacy: psychological burden (Hospital Anxiety and Depression Scale—HADS), quality of life (WHOQOL-Bref), and sense of dignity (Patient Dignity Inventory—PDI).Results: In total 38.6% of all eligible patients (n = 140) consented and were enrolled. Along the study six participants (11.1%) dropped out. Patients' satisfaction with the treatment was high and with no significant difference between the groups. HADS scores were significantly lower in both groups at the 3-months follow-up (immediate group: mean difference = −2.69, SE = 0.85, P = 0.003; delayed group: mean difference = −1.97, SE = 0.89, P = 0.031). There was no significant group by time interaction effect (F = 0.71; df = 2, 70.3; P = 0.50). PDI scores only decreased significantly (i.e., improvement of dignity) in the immediate group (mean difference = −6.56, SE = 1.63, P < 0.001; delayed group: mean difference = −3.01, SE = 1.69, P = 0.081), but the group by time interaction effect was not statistically significant (F = 2.29; df = 1, 46.8; P = 0.14). Quality of life improved in some respects by the treatment, but the immediate and the delayed group did not differ significantly over time. After pooling patients' data of both groups, Dignity Therapy resulted in significant improvements in almost all outcome measures. Patients' family members/close friends reported high satisfaction with the intervention.Conclusions: Our findings suggest that Dignity Therapy is feasible and highly accepted in patients with early stage dementia. Patients reported significant improvements, however, there was no significant effect of the intervention in the immediate treatment group compared to the delayed group.
ObjectivesDue to an aging population, the number of persons living with dementia (PWDs) is increasing worldwide. Romantic partners, as informal caregivers (IC) of PWDs, are often adopting additional tasks. The concept of dyadic coping (DC) addresses how couples cope with stress together. For dyadic coping to be successful, efforts of both partners should be equal. The current study examines how discrepancies in PWDs and ICs perspectives on DC relate to distress and quality of life in each partner within couples facing early stage dementia (ESD).MethodsA total of 37 mixed-sex couples including one partner with ESD completed self-report questionnaires. Discrepancies in reciprocity (comparing provided or received levels of DC between partners), equity (each partner balancing own levels received and provided), and congruence (the agreement about levels of DC exchanged between partners) and their covariation with distress and quality of life (QoL) of each partner were measured.ResultsBoth partners indicated a discrepancy in reciprocity: PWDs reported receiving more DC than ICs reported receiving, which was associated with higher QoL in PWDs and lower QoL in ICs. Inequities were found in ICs only, who reported receiving less DC, than providing. No relation between inequities and distress or QoL was found. ICs reported more incongruencies than PWDs did, which was associated with higher QoL and less depression in partners.DiscussionA redivision of tasks and roles in the early stage of dementia is associated with different experiences and views between partners. Whereas ICs take over most household and care tasks within the couple, their effort was considered less helpful by PWDs than by ICs. A high care burden is associated with a compromised quality of ICs’ social life and living conditions. The clinical implications of the results are discussed.
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