The Online Life Story Book: A randomized controlled trial on the effects of a digital reminiscence intervention for people with (very) mild dementia and their informal caregivers.

This paper describes a randomized controlled trial on the Online Life Story Book (OLSB), a digital reminiscence intervention for people with (very) mild dementia living at home. The aim of the study was to investigate the effectiveness of the OLSB on (i) neuropsychiatric symptoms (NPS) in persons with dementia and (ii) the distress and quality of life (QOL) of primary informal caregivers. A randomized controlled trial with individual randomization to one of two conditions was conducted: 1) intervention "Online Life Story Book"; 2) wait list control condition. In the intervention OLSB, a trained volunteer guided the participants through the process of creating an OLSB in approximately 5 meetings within a period of 8-10 weeks. Participants in the control condition received care as usual while they waited for 6 months before starting. Outcomes on NPS and distress and QOL of the informal caregiver were assessed at baseline (baseline, T0), 3 months (T1) and 6 months (T2) post baseline. Of the 42 persons with dementia, 23 were female and 19 were male. They had a mean age of 80 years, ranging from 49 to 95. The total drop-out rate was 14.3 percent. Small but insignificant effects on NPS, caregiver distress and QOL of caregivers were found with the exception of self-rated caregiver distress that reduced significantly during the intervention. One reason to explain the results might be that the included participants were in relatively good health. Practical challenges during the intervention could have affected the results as well. It might also be that the intervention caused effects on other outcomes than NPS and caregiver distress. In future research, it is important to study the effects in persons with more complaints and higher distress and to be careful in the selection of outcome variables in relation to the reminiscence functions served by the intervention.

Exploring compassionate attributes and skills among individuals participating in compassion-focused therapy for enhancing well-being.

OBJECTIVES: The conceptual approach of compassion underlying compassion-focused therapy (CFT) is based on theoretical rather than empirical grounds. The aim of the present study was to seek empirical support for components of compassion as outlined in the theoretical model underpinning CFT, and to explore which components, if any, matter most for improving well-being. DESIGN: A sequential exploratory mixed methods design was employed. METHODS: Alongside a randomized controlled trial (RCT), we systematically examined 625 emails sent by 87 RCT participants to five counsellors during the course of a well-being enhancing CFT self-help intervention, to identify theoretically based compassionate attributes and skills. Next, in a quantitative analysis, we compared participants who did and did not show clinically relevant improvement on well-being with regard to the occurrence of compassionate attributes and skills. RESULTS: Although the theoretical model of compassion integral to CFT was largely supported by the emails, it was slightly simplified so as to better fit the data. The adjusted model comprises five compassionate attributes (i.e., care for well-being, sensitivity, empathy, distress tolerance, and common humanity) and four compassionate skills (i.e., compassionate attention, reasoning, behaviour, and feeling/sensation). Three illustrative cases are presented to contribute to a better understanding of fundamental components of compassion. Quantitative analyses indicate that participants showing clinically relevant improvement on well-being expressed significantly more compassionate feeling/sensation compared to those who did not. CONCLUSIONS: We found preliminary evidence for the conceptualization of compassion underlying CFT. Compassionate feeling/sensation bears particular interest when well-being is the intended outcome of CFT. PRACTITIONER POINTS: Individuals participating in compassion-focused therapy for enhancing well-being experience a wide range of compassionate attributes and skills. Compassion-focused therapy may instigate well-being if a client is able to experience compassionate feeling/sensation.

Life story books for people with dementia: a systematic review.

ABSTRACTObjectives:There is an increasing evidence that reminiscence therapy is effective in improving cognitive functions and reducing depressive symptoms in people with dementia. Life story books (LSBs) are frequently used as a reminiscence tool to support recollecting autobiographical memories. As little is known about how LSBs are used and what type of studies have been employed to evaluate LSB interventions, we conducted a systematic review. METHODS: The electronic databases Scopus, PubMed, and PsychINFO as well as reference lists of existing studies were searched to select eligible articles. Out of the 55 studies found, 14 met the inclusion criterion of an original empirical study on LSBs in people with dementia. RESULTS: The majority of the LSBs were tangible books, although some digital applications were also found. The LSBs were created mostly in individual sessions in nursing homes with a median of six sessions. Some studies only focused on the person with dementia, while others also examined (in)formal caregivers. Most studies used qualitative interviews, case studies, and/or (pilot) randomized controlled trial (RCTs) with small sample sizes. Qualitative findings showed the value of LSBs in triggering memories and in improving the relation with the person with dementia. Quantitative effects were found on, e.g. autobiographical memory and depression of persons with dementia, quality of relationship with informal caregivers, burden of informal caregivers, and on attitudes and knowledge of formal caregivers. CONCLUSIONS: This systematic review confirms that the use of LSBs to support reminiscence and person-centered care is promising, but larger RCTs or implementation studies are needed to establish the effects of LSBs on people with dementia.

The effectiveness of creating an online life story book on persons with early dementia and their informal caregivers: a protocol of a randomized controlled trial.

BACKGROUND: Dementia has a high burden for patients, informal caregivers and society. Given changes in care systems, more persons with dementia will live longer at home. However, living at home (with dementia) with a good quality of life is not easy to achieve. Dementia is often accompanied by neuropsychiatric symptoms like apathy, agitation, depression, and anxiety, which have a negative impact on quality of life. Whereas cognitive deterioration can hardly be influenced, it is possible to reduce neuropsychiatric symptoms. As autobiographical memories remain intact for a relatively long time in dementia, reminiscence interventions can promote feelings of pleasure and trust. The Online Life Story Book (OLSB) allows to digitally share memories (stories, pictures, video or audio fragments). The main objective is to study the effects of the OLSB on neuropsychiatric symptoms. The study has four secondary objectives: 1) to study the effectiveness of the intervention on the burden and quality of life of the primary informal caregiver; 2) to provide a preliminary health-economic evaluation; 3) to study the (time to) nursing home admittance as a longer term effect; 4) to provide a process evaluation. METHODS AND DESIGN: A randomized controlled trial with individual randomization to one of two conditions is conducted: 1) intervention "Online Life Story Book"; 2) control condition (care as usual). Participants are persons with early dementia and their primary caregivers. In the intervention OLSB, a trained volunteer guides the participants through the process of putting together a timeline of their lives during 5 meetings within a period of 8-10 weeks. To assess the effects of the intervention on the primary outcome, neuropsychiatric symptoms, the Neuropsychiatric Inventory (NPI) will be assessed at three time points: before the intervention (baseline, T0), 3 months (T1) and 6 months (T2) post baseline. DISCUSSION: When proven effective, the Online Life Story Book can be a valuable addition to the existing provision of care for persons with dementia and their informal caregivers. TRIAL REGISTRATION: This study has been approved by the Twente Medical Ethics Committee under the file number p16-04 (Dutch Trial Register: NTR5939 , date of registration: 14 March 2016).