Life Story Books Research Articles

Unfolding memories: Crafting digital life storybooks for dementia care via telehealth.

Dementia, a rapidly growing cognitive disorder, has a profound impact on the lives of individuals and their caregivers across the globe. Digital life storybooks have emerged as a promising non-pharmacological intervention to improve the wellbeing of people living with dementia (PLWD). This study aims to investigate the feasibility of developing and applying a digital life storybook for PLWD using telehealth, while evaluating its impact on communication skills, quality of life (QoL) and satisfaction levels. A mixed-method study design will be employed, involving pairs of PLWD and their primary caregivers (dyads) recruited from a teaching hospital and a non-profit organization in Malaysia. The intervention involves the creation and use of a digital life storybook facilitated remotely via telehealth channels. Data will be collected at 6 points in time: prior to the commencement of development, prior to the submission of an application, on a biweekly basis, and at the conclusion of the assessment period. Quantitative measures will include the Holden Communication Scale, Quality of Life-Alzheimer's Disease Scale (QoL-AD) and Quality of the Caregiving Relationship (QCPR) questionnaire. Qualitative data will be gathered through validated open-ended questions. Implications of the study include facilitating future research, contributing to person-centered care practices, and providing caregivers with tools to better understand and connect with PLWD. The findings will contribute to the understanding of the mechanisms through which digital life storybooks can benefit PLWD and their caregivers. The successful implementation of this protocol could have significant implications for dementia care in both formal and informal settings, and could ultimately improve the lives of those affected by dementia.

Digital Life Story Books: Intervention to maintain sense of self in older adults with memory difficulties

ABSTRACT The sharp increase in dementia and age-related memory impairments worldwide has made reminiscence-based interventions attractive. Past research is mixed with little focus on self-functioning. The aims of this study were (i) to develop and assess the implementation of a reminiscence-based intervention, Digital Life Story Books, grounded in evidence-based principles of autobiographical memory, and (ii) to evaluate its effectiveness in improving sense of self in older adults with memory difficulties. A remote reminiscence intervention, using multisensory Digital Life Story Books (DLSB), was developed. Using a short-term experimental, longitudinal design, 25 participants with memory difficulties were assigned to the DLSB condition (16 females; M = 73.96, SD = 8.8) and 23 to a Wait-List Control (16 females; M = 78.57, SD = 9.38). Informal caregivers (N = 34; M = 63.44, SD = 13.8) provided proxy-reports on the effects of the DLSB. The DLSB was successfully developed and positively evaluated by participants. In the DLSB condition, a strengthened sense of self, reflected directly in the memories selected for the DLSB was detected. No overall condition difference was detected pre- to post-therapy. The findings highlight the appeal of reminiscence activities but also the challenge of adequate measurement sensitivity to demonstrate effects.

Life Story Books as A Reminiscence Therapy Tool for Dementia: An Updated Review From 2018-2023

Life Story Books as A Reminiscence Therapy Tool for Dementia: An Updated Review From 2018-2023

Adapting Technology for Dementia Care: The Case of Emobook App in Reminiscence focused Music Therapy

INTRODUCTION: Life Story books are frequently employed to facilitate reminiscence interventions, but their use in Music Therapy remains limited in the scientific literature. There is a paucity of research detailing the design processes involved in this context.OBJECTIVES: This paper aims to report on the adaptation of the Emobook Life Story Book App for a Reminiscence Music Therapy Program for people living with dementia.METHODS: An interdisciplinary team comprising an interaction designer, a software engineer, a music therapist, and a research assistant engaged in a Participatory Design process. The study comprised two distinct phases: "Adaptation Phase," aimed to identify features requiring adjustment to integrate Emobook into MT effectively and the "Implementation Phase," focused on evaluating the adequacy of these changes for Emobook's use within the Music Therapy ProgramRESULTS: By merging the requirements identified during each phase, additional improvements were generated, leading to the decision to evolve Emobook Post-Prototype towards a version tailored specifically for Music Therapy.CONCLUSION: Collaborative, interdisciplinary efforts are essential in advancing the incorporation of technology into music therapy practice. This study demonstrates the value of a Participatory Design approach in this regard.

A DIGITAL LIFE STORY BOOK ACTIVITY FOR OLDER ADULTS WITH MEMORY DIFFICULTIES: PROGRAM EVALUATION

Abstract Reminiscence activities are based on maintaining a core set of personal memories to aid self-continuity (Woods, 2012). Some interventions find limited effects (Charlesworth et al, 2016) but with participants reporting high satisfaction with the program. The aims of the current study were to: (i) demonstrate feasibility of intervention delivery to older individuals with memory difficulties, and (ii) provide analyses of program efficacy using a pre-posttest, control group design. Participants (N = 45; Mage = 76.12) were randomized to the Life Story Book intervention or Waitlist Control. A Life Story Book Interview was developed, using five evidence-based principles of autobiographical memory. Personalized multimedia books were created and reviewed by participants for fourteen days. To assess feasibility, participants in the intervention completed a memory quality questionnaire and feedback survey. Those who reviewed Life Story Books reported improved memory quality pre-post intervention, t(22) = -2.39, p = .026. Participants also positively rated their intervention experience at post-test, (M = 4.46/5). All participants completed self-related questionnaires (e.g., self-continuity, self-esteem) at pretest-posttest. No measure showed significant effects. Our results represent a conundrum for researchers. We provide evidence of feasibility of, and participant enthusiasm for, this reminiscence-based intervention. As seen in the literature, however, (Elfrink et al., 2021), sensitivity to detect pretest-postest change remains a challenge. The current study highlights participants positive reactions to reminiscence-based Life Story Books. Findings are discussed in terms of methods for assessing intervention efficacy in individuals with memory decline.

Remembering the Past with Today's Technology: A Scoping Review of Reminiscence-Based Digital Storytelling with Older Adults.

Reminiscence has been identified as a potentially effective intervention strategy for the mental health of older adults. It has been suggested that reminiscence work and subsequent production of a life storybook (e.g., DST: digital storytelling) is associated with improvements in the well-being of older adults. The specific objectives of this scoping review are to: (1) examine how reminiscence-based DST is conducted/used with older adults, (2) identify whether and how intergenerational engagement is included in this literature, and (3) report on the outcomes identified in this literature, including older adults as well as other participants such as co-creators and viewers of DST. A scoping review following the Joanna Briggs Institute's methods and the Arksey and O'Malley framework examined studies published in English that included reminiscence with older adults and incorporated digital storytelling. The initial search resulted in 702 articles for review, and following screening, 35 studies were included for full-text review. A total of 10 articles specifically on reminiscence-based DST were identified for final review. Only one study intentionally included intergenerational engagement in its design. DST impacted older adults on their personal meaning and catharsis, social connectedness, cognitive function, and spiritual and emotional well-being. Impacts on reviewers and creators were also reported. Overall, the combination of individual reminiscence work with intergenerational engagement and the use of DST is largely understudied. Additional research is warranted given there is a credible evidence base for these types of interventions.

Reminiscence and Digital Storytelling to Improve the Social and Emotional Well-Being of Older Adults With Alzheimer's Disease and Related Dementias: Protocol for a Mixed Methods Study Design and a Randomized Controlled Trial.

Increasing attention is being given to the growing concerns about social isolation, loneliness, and compromised emotional well-being experienced by young adults and older individuals affected by Alzheimer disease and related dementias (ADRD). Studies suggest that reminiscence strategies combined with an intergenerational approach may yield significant social and mental health benefits for participants. Experts also recommended the production of a digital life story book as part of reminiscence. Reminiscence is typically implemented by trained professionals (eg, social workers and nurses); however, there has been growing interest in using trained volunteers owing to staffing shortages and the costs associated with reminiscence programs. The proposed study will develop and test how reminiscence offered by trained young adult volunteers using a digital storytelling platform may help older adults with ADRD to improve their social and emotional well-being. The proposed project will conduct a randomized controlled trial to assess the effects of the intervention. The older and young adult participants will be randomly assigned to the intervention (reminiscence based) or control groups and then be randomly matched within each group. Data will be collected at baseline before the intervention, in the middle of the intervention, at end of the intervention, and at 3 months after the intervention. An explanatory sequential mixed methods design will be used to take advantage of the strengths of both quantitative and qualitative methods. The quantitative data from surveys will be entered into SPSS and analyzed using covariate-adjusted linear mixed models for repeated measures to compare the intervention and control groups over time on the major outcomes of participants. Conventional content analysis of qualitative interviews will be conducted using data analysis software. The project was modified to a telephone-based intervention owing to the COVID-19 pandemic. Data collection started in 2020 and ended in 2022. In total, 103 dyads were matched at the beginning of the intervention. Of the 103 dyads, 90 (87.4%) dyads completed the midtest survey and 64 (62.1%) dyads completed the whole intervention and the posttest survey. Although we are still cleaning and finalizing data analyses, the preliminary results from both quantitative and qualitative data showed promising results of this intergenerational reminiscence approach that benefits both the older adults who have cognitive impairments and the young adult participants. Intergenerational reminiscence provided by young adult college student offers promising benefits for both the younger and older generations. Future studies may consider scaling up this pilot into a trackable, replicable model that includes more participants with diverse background (eg, public vs private college students and older adults from other agencies) to test the effectiveness of this intervention for older adults with ADRD. ClinicalTrials.gov NCT05984732; https://classic.clinicaltrials.gov/ct2/show/NCT05984732. DERR1-10.2196/49752.

Comparación de los libros de historia de vida digitales y convencionales sobre el estado de ánimo, la comunicación, la cognición y la calidad de vida en personas con demencia en residencias: un estudio piloto

IntroductionPerson-centered care (PCC) includes life story, a form of reminiscence therapy that can be useful in the treatment of dementia. We compared the efficacy of using a digital or conventional life story book (LSB) on depressive symptoms, communication, cognition, and quality of life. Material and methodsThirty one persons with dementia living in 2 PCC nursing homes were randomly assigned to receive reminiscence therapy based on the Neural Actions digital LSB (n=16) or a conventional LSB (n=15). Both groups performed 2 weekly sessions of 45min for 5 weeks. Depressive symptoms were evaluated with the Cornell scale (CSDD); communication with the Holden scale (HCS), cognition with the Mini Mental State Examination (MMSE) and quality of life with the quality of life scale for Alzheimer's (QoL-AD). The results were analyzed using ANOVA of repeated measures with the jamovi 2.3 program. ResultsBoth LSB improved communication skills (η2=0.115; p<0.001), with no differences between groups. No effects on quality of life, cognition, or mood were found. ConclusionsIn PCC centres digital or conventional LSB can be useful in the treatment of people with dementia by facilitating communication. Its role on quality of life, cognition or mood is uncertain.

A Pilot Study of Remote Use of a Life Storybook Intervention Involving Family Members of Persons with Dementia

A Pilot Study of Remote Use of a Life Storybook Intervention Involving Family Members of Persons with Dementia

치매노인의 지역사회 계속 거주 지원을 위한 개별화 인지기반 중재

In this study, based on the ICF framework, the effect of cognitive-based interventions on the support of the elderly with dementia was evaluated.&#x0D; Individualized cognitive-based interventions were provided to three elderlies with relapsed dementia, for a total of 20 sessions twice a week at a local senior center and at home. Individualized cognitive-based interventions include general cognitive stimulation activities conducted in groups or individually, cognitive training using workbooks or computerized tools to maintain and enhance specific cognitive functions, tasks of subjects' cognitive rehabilitation, and life story book- making activities to modify the environment and train daily life activities by analyzing the needs and priorities of the people.&#x0D; Task performance and satisfaction with goal activities related to daily life and basic daily life performance improved in all three patients. There were positive changes in instrumental daily living activities, cognitive function, subjective memory complaints, depression, severity of BPSD, and general health in two out of three patients.&#x0D; To support aging in elderly with dementia, interventions targeting environmental factors that affect participation in daily activities and improve cognitive function should be implemented.

Effectiveness of life story book intervention on apathy and verbal fluency in people with dementia

ABSTRACT Objectives This study determined whether the individual intervention of using life story books (LSBs) improves apathy and verbal fluency in people with dementia (PWD). Methods The intervention group (n = 43) underwent 3 interviews in the 10 weeks following an initial assessment. Based on the information obtained, LSBs were developed; participants received individual interventions weekly, five times for four weeks. They also received a final assessment 12 weeks after the end of the intervention. Primary outcome measures comprised the Categorical Verbal Fluency Test (CFT) and the Neuropsychiatric Inventory–Nursing Home Apathy sub-item. The control group (n = 32) underwent initial and final assessments at intervals of 28 weeks while receiving the best care services. Results CFT scores for participants with mild to moderate dementia increased from 4.3 to 5.3 (P < .05) and the interaction effect of group and data collection timing was significant (p < .05). Apathy score for participants with severe dementia also improved from 4.5 to 2.5 (P < .05) immediately after the intervention period. Conclusions LSB is a comprehensive communication tool that encourages apathy and verbal fluency. Clinical implications The use of LSB may allow caregivers to achieve intervention effects on apathy and verbal fluency in PWD.

Life story work for children and youth in out of home care: A systematic review and synthesis of qualitative studies

BackgroundLife Story Work (LSW) is a biographical narrative approach used within health and social care settings that offers individuals an opportunity to talk and think about their lived experiences. LSW is embedded in government out-of-home care (OOHC) policy nationally and internationally. Despite this, little is known about how LSW is implemented in OOHC or the experience of key stakeholders. We conducted a systematic review and synthesis of qualitative studies to address these knowledge gaps. MethodsWe searched eight academic databases and reference lists (2006 to July 2021) for qualitative studies or those reporting qualitative data on LSW involving children aged < 18 years in an OOHC setting. ResultsWe identified 21 eligible studies from 706 records. The most popular LSW offering was life story books. Common OOHC settings for LSW implementation were adoption, home-based and residential care. OOHC was used to a lesser extent in family group homes and independent living settings. OOHC children valued LSW when it represented a comprehensive record of their lives, retaining their LSW in later years. Carers valued involvement in the LSW process and wanted a realistic life record. Facilitators and support workers viewed LSW as a beneficial adjunct but reported lack of training and support. ConclusionsLSW is a valuable approach in OOHC settings. The process should commence early and continue with adequate support and training for carers and professionals. There is need for implementation in other OOHC settings, and controlled trials to establish the effect of the approach on social and emotional outcomes.

Digital interventions for people with dementia and carers: effective, cost-effectiveand equitable?

Digital interventions for people with dementia and carers: effective, cost-effectiveand equitable?

Effectiveness of the Biography and Life Storybook for Nursing Home Residents: A Quasi-Experimental Study.

There are currently limited studies that have examined the use of the biography and life storybook (BLSB) among the Asian older adult populations in the long-term care setting. This quasi-experimental study aimed to examine its impact on life satisfaction scores, depression, and quality of life among nursing home residents in Singapore. Two wards were assigned to either the intervention or control group. The intervention group was assigned to the BLSB intervention, which comprised eight nurse-facilitated structured sessions over three months and their usual daily activities, whereas the control group was assigned to the routine activities. A total of 74 nursing home residents completed the study, with 37 in each group. The BLSB intervention improved depression, quality of life, and life satisfaction for nursing home residents in Singapore, with significant results observed across all three outcomes over the 3-month period. The study findings support the use of BLSB as an effective reminiscence-based intervention for older adults in an Asian nursing home setting.

Preserving Narrative Identity for Dementia Patients: Embodiment, Active Environments, and Distributed Memory

One goal of this paper is to argue that autobiographical memories are extended and distributed across embodied brains and environmental resources. This is important because such distributed memories play a constitutive role in our narrative identity. So, some of the building blocks of our narrative identity are not brain-bound but extended and distributed. Recognising the distributed nature of memory and narrative identity, invites us to find treatments and strategies focusing on the environment in which dementia patients are situated. A second goal of this paper is to suggest various of such strategies, including lifelogging technologies such as SenseCams, life story books, multimedia biographies, memory boxes, ambient intelligence systems, and virtual reality applications. Such technologies allow dementia patients to remember their personal past in a way that wouldn’t be possible by merely relying on their biological memory, in that way aiding in preserving their narrative identity and positively contributing to their sense of well-being.

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.

Evaluating Nursing Home Resident and Staff Experiences With a Life Story Program.

Life story programs hold promise for improving person-centered care and relationships between nursing home residents and staff. A pilot life story intervention study in 16 nursing homes provided residents with complimentary biographical life story books and summaries, and staff with action plans to enhance care planning. Trained volunteers and program staff collected life stories, and researchers interviewed 170 residents at three points in time. Overall, residents had positive experiences with the program, but were less willing to share their books with others afterwards. They also experienced a decrease in depression (Patient Health Questionnaire-8 [PHQ-8]) over time. Surveys of 92 staff demonstrated increases over time in perceived importance of knowing residents' life stories. Administrator/admissions staff found it conditionally feasible to incorporate the program into admission processes. Practice implications of life story work include opportunities to help staff learn more about residents they care for, improve person-centered care, and honor resident preferences in care planning.

Using the Life Story Book With Mentally Alert Residents of Nursing Homes

Depression and lack of meaning in life (MIL) are common among residents of nursing homes (NHs) and contribute to a reduction in overall health and well-being. Life Story Book (LSB), a reminiscence intervention, is designed to provide a person with the opportunity to review their past and capture their life stories and photographs into a book. LSB has demonstrated positive outcomes for residents of NHs with dementia, yet little is known for residents without dementia. A switching replication design was used to examine the effects of LSB among 21 mentally alert residents from two NHs (NH-A and NH-B) in Houston, Texas. Participants in NH-A received three weeks of the LSB intervention, while NH-B received three weeks of care-as-usual; the intervention was then switched. The GDS-12R and the MIL questionnaire (MLQ) were used to measure depressive symptoms and MIL respectively. Participants from NH-A (n =11) and NH-B (n = 10) had a mean age of 75 years (SD =11.34); 81% female; 52% non-Hispanic white and 33% African American. Results from a one-way MANCOVA found no statistically significant difference on the GDS-12R and MLQ (F(3, 14) = 2.50, p = .102; Wilks’ Lambda = .652; η2 = .35). Further analyses comparing the pre-intervention and post-intervention scores for the entire sample (N =21) found a significant reduction in depressive symptoms (M = 2.67; SD = 2.52) and (M =1.67, SD = 2.29); (t (20) = 2.21, p = 0.039). The potential benefits of LSB for mentally alert residents of NHs warrants further research.

Developing Life Stories for Nursing Home Residents and Examining the Impact on Residents and Staff

A life story program was implemented in 16 nursing homes (NHs) in Ohio with partners including a company specializing in life story work and a gerontological institute. The aim was to evaluate the impact of the life story program on residents and staff. NH sites were selected from an urban/suburban and a rural county using sampling procedures ensuring variation in auspice, quality star ratings and bed size. A longitudinal design was used to conduct in-person interviews with residents at baseline (prior to the life story interview), immediately after the interview, and approximately a month after most life story books were delivered to a NH. Resident eligibility criteria included being age 60 or older, Medicaid-eligible, long-stay and having no to moderate cognitive impairment. Residents’ (n=238) average age was 77 years, 66% were female, and 52% had resided in the NH for 1-5 years. Cognitive scores declined over time, but depressive symptomatology improved significantly. Residents had very high levels of satisfaction with care, enjoyed telling their life stories and would recommend the program; these findings did not change. A pre-post study design was used with staff (n=198), who included nurse aides, nurses, administrators, social workers and activity staff. Their average age was 44 years. Although staff job satisfaction did not change significantly, the vast majority enjoyed learning about residents’ life stories and used them in care planning. The findings demonstrate that life story work may be useful in promoting person-centered care, although further testing is needed with a more generalizable sample.

Understanding the shared experiences of creating a digital life story with individuals with dementia and their spouse.

Life story books in dementia are used as a part of person-centred care. Whilst the current literature demonstrates associations between completing life story books and increased well-being, little is known about the process and how it is experienced by individuals living with dementia. Life stories are often created with a loved one, such as a partner or spouse; however, further research is required to explore experiences of life story work as a shared endeavour. Furthermore, the use of technology to create life stories is growing, with little known about how digital elements are experienced. This study aimed to understand these gaps by exploring the shared experiences of individuals with dementia and their partner/spouse creating a digital life story book. Four couples participated in the six-week creation of their digital life story book. Following this, qualitative data relating to couples' experiences were collected via semi-structured interviews. Thematic analysis was used to interpret data and identified four superordinate themes relating to the shared experiences of creating their digital life story book: 'Creating a life story book is a huge undertaking', 'Looking back and looking forward: The emotional journey', 'Whose story is it and who does it belong to?' and 'Challenges of using technology to build the life story book'. Overall, this study demonstrated that creating a digital life story was a positive experience that can support couples' well-being, but we should not underestimate the time it will take and range of emotions experienced. The experience of using technology varied, emphasising that we must be mindful of individual preferences before considering a digital approach.