Caregiver experience of the Norwegian manual for individual cognitive stimulation therapy (iCST): a qualitative study.

OBJECTIVES: This research project investigated how family carers in Norway experienced delivering iCST, their need for supervision and the potential for co-occupation. METHODS: Reflexive thematic analysis was used to understand the experiences of 11 carers using iCST for 8 wk. Three semi-structured interviews were conducted with each participant, including a pre-assessment of caregiver burden and a rating of dementia severity. RESULTS: Most carers described the manual as self-instructive. Some felt overwhelmed when starting iCST. It was important to plan and individualise the sessions to the specific needs of the person with dementia. After delivering iCST the carers described new insights into the person with dementia's resources and challenges. Obstacles to doing iCST were related to the context, the manual or to specific challenges linked to the person with dementia or to the carer. Most participants described positive experiences, in which shared interaction, engagement and mastery were common. CONCLUSION: When the carer understands the iCST programme as a tool and adapts it to the specific needs of the person with dementia then co-occupation and positive interactions happen. However, some carers would benefit from supervision and the iCST programme did not address all persons with dementia.

"I Want to Do Something" - Exploring What Makes Activities Meaningful for Community-Dwelling People Living With Dementia: A Focused Ethnographic Study.

Supporting ageing in place, quality of life, and activity engagement are public health priorities for people with dementia. The importance of maintaining opportunities for meaningful activities has been widely acknowledged for those with dementia in long-term care, but little is known about what makes activities meaningful for, and how they are experienced by, people with different types of dementia in their own homes. This study used focussed ethnographic methods to explore the motivations and meanings of everyday activity engagement within the homes of 10 people with memory-led Alzheimer's disease and 10 people with posterior cortical atrophy. While participants' interactions with their everyday environments were challenged by their diagnoses, they were all finding ways to continue meaning-making via various activities. The main findings are encapsulated in three themes: (1) The fun and the function of activities; (2) Reciprocities of care, and (3) The constitution and continuity of (a changing) self. Ongoing engagement with both fun and functional activities offered participants living with different dementias opportunities to connect with others, to offer care and support (as well as receive it), and to maintain a sense of self and identity. Implications are discussed regarding the development and delivery of tailored interventions and support to enable continued engagement in meaningful activities for people with different types of dementia living in the community.

The effects of virtual reality interventions on occupational participation and distress from symptoms in palliative care patients: A pilot study.

BACKGROUND: Virtual reality (VR) offers the prospect of a safe and effective adjunct therapeutic modality to promote mental health and reduce distress from symptoms in palliative care patients. Common physiological and psychological symptoms experienced at the end of life may impact the person's participation in day-to-day activities that bring them meaning. The purpose of this study was to examine the effect of VR interventions on occupational participation and distress from symptoms. OBJECTIVES: To describe the stimulus, results, and learnings from a single-site pilot study of virtual reality therapy in a specialist palliative care setting. METHODS: Participants engaged in a VR session lasting from 9 to 30 minutes related to coping with pain, inner peace and mindfulness, adventure, and bucket list. METHODS MEASURES: The pilot prospective quantitative observational cohort study was conducted from November 2021 through March 2022 using a pre-post VR intervention research design. Quantitative data was collected using patient-rated assessments and a wireless pulse oximeter. Occupational performance, satisfaction, and distress symptoms were measured using the Canadian Occupational Performance Measure and the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). The intervention and study design adhered to international guidelines. RESULTS: Ten participants engaged in the VR interventions. Data showed significantly improved occupational performance and satisfaction scores (p < .001), decreases in PCOC SAS distress from pain (p = .01), fatigue (p < .001), and heart rate (p = .018). No adverse side effects were observed. SIGNIFICANCE OF RESULTS: Outcomes included an analysis of virtual reality's effectiveness to alleviate symptom burden and increase occupational participation for palliative care patients. Of specific interest to the research team was the application of virtual reality in a community-based and inpatient palliative care context to supplement allied health services and its feasibility of integration into standard palliative care. CONCLUSION: VR therapy showed positive improvements in the participants' occupational performance, satisfaction, and distress from pain and fatigue.

The impact of covid-19 lockdown on the Quality of life, meaningful activities, and frailty in community-dwelling octogenarians: A study in Belgium.

OBJECTIVES: To investigate the impact of COVID-19 lockdown on quality of life (QoL), meaningful daily activities, and (pre)frailty in community-dwelling octogenarians. METHODS: Cross-sectional design with bivariate and multiple linear regression modeling using a stepwise approach examining the level of QoL during the COVID-19 lockdown in a group of 215 community-dwelling octogenarians (Mage = 86.49 ± 3.02). A comprehensive set of biopsychosocial variables (FRAIL scale, general health, engagement in meaningful activities survey, questions on loneliness, and feelings) were used as explaining variables. RESULTS: Particularly, a decrease in daily activities, social activities, and an increase in free times activities were observed, but the decrease in QoL could be explained by the meaningfulness in activities, together with experiencing emptiness in life, taking ≥ 4 medications a day and feeling down or depressed. CONCLUSIONS: We tried to understand which components contribute to and might affect a person's QoL caused by restrictions imposed by the governance and its influence on the lives of the community-dwelling octogenarians. As such, this output could be a baseline for the development of minimally impacting countermeasures during future lockdowns. CLINICAL IMPLICATIONS: Studying lifestyle changes and thus also variables related to QoL during a pandemic, may support policymakers and practitioners to develop relevant interventions.

Participation in daily activities after acute illness hospitalization among high-functioning older adults: a qualitative study.

AIMS AND OBJECTIVES: To describe high-functioning older adults' experiences of participation in daily activities and perceived barriers and facilitators to participation one- and 3-months post-acute hospitalization. BACKGROUND: Older adults discharged after acute illness hospitalization are at risk for functional decline and adverse health outcomes. Yet, little is known about the subjective experience of resuming participation in meaningful activities beyond the immediate post-discharge period among high-functioning older adults, a mostly overlooked sub-sample. DESIGN: Qualitative descriptive longitudinal study adhering to the COREQ guidelines. METHODS: Forty two participants ages ≥65 years (mean age 75, SD ± 7.9) were recruited from internal medicine wards. Semi-structured interviews were conducted at participants' homes one-month post-discharge, followed by a telephone interview 3-months after. Data were analyzed using thematic analysis. RESULTS: Participants perceived the hospitalization as a disruption of healthy and meaningful routines. This first key theme had unique expressions over time and included two sub-themes. At one month: (1) reduced life spaces and sedentary routines. At 3 months: (2) a matter of quality not quantity - giving up even one meaningful activity can make a difference. The second key theme was described as a combination of physical and psychological barriers to participation over time. These themes demonstrated the profound impact of the hospitalization on behavior (participation) and feelings (e.g., symptoms). The third key theme was described as a dyad of intrinsic and extrinsic facilitators to participation. CONCLUSIONS: Acute illness hospitalization may lead to subtle decreases in participation in meaningful health-promoting activities, even among high-functioning older adults. These changes may impact overall well-being and possibly mark the beginning of functional decline. RELEVANCE TO CLINICAL PRACTICE: This study highlights the need for a more comprehensive assessment of participation, relevant for high-functioning older adults, to enable person-centered care. Intervention programs should address the modifiable barriers and facilitators identified in this study.

"And then the rest happened"- A qualitative exploration of the role that meaningful activities play in recovery processes for people with a diagnosis of substance use disorder.

Background: In this qualitative exploration, we report on a thematic analysis of the key role that engaging in meaningful activities may play in recovery processes for people with a diagnosis of substance use disorder (SUD). Methods: We conducted semi-structured, individual interviews with 30 participants and analyzed the parts of this material that were related to meaningful activities. Results: The findings are summarized through the development of three broad themes: (a) the central role of work-"The wages suck, but the job is gold"; (b) mastery and commitment-"I had to get up early, find my spot, I had to be present and fully functioning all day"; and (c) repairing the bridge to community life-"It's my job and working out that has made this possible, really, I see that now." Conclusion: We discuss these findings in relation to a recovery perspective and relevant empirical studies, highlight some important implications for research and practice, and consider the strengths and limitations of the present study.

Maintaining meaningful activities for persons with dementia during transitions of care: A systematic review.

This systematic review summarizes the experiences with maintaining meaningful activities for persons with dementia during transitions of care, including related barriers and facilitators, and interventions and strategies. A systematic search was performed in eight databases. The methodological quality was assessed with the Mixed Methods Appraisal Tool. Four articles were included; one describing the transition from home to hospital and vice versa, and three describing the transition from home to nursing home. The narrative synthesis revealed a decrease of meaningful activities after transition. Facilitators of and barriers to maintaining meaningful activities during transitions were related to the person with dementia, informal caregivers, healthcare professionals and organization of care, as well as the environment. Interventions and strategies focused on continuously adjusting meaningful activities to the person. To conclude, maintaining meaningful activities during transitions is an under-researched area. Several recommendations are provided for healthcare professionals and organizations.

The influence of the down- and upscaling of activities in long-term care facilities during the COVID-19 visitor ban on caregivers' exhaustion and ability to provide care and support: A questionnaire study.

In the Netherlands, a national visitor-ban was in place in LTCFs during the first outbreak of COVID-19 in 2020. Meaningful activities were cancelled or downscaled, while others were performed more often. It is known that a lack of activities has several negative effects on residents, while the impact on caregivers remains largely unexplored. Here we investigate the influence of the down- and upscaling of activities on caregivers' physical and emotional exhaustion and their perceived ability to provide care and support. Downscaling of activities for residents, in particular watching television and musical activities, had a negative impact on caregivers' emotional exhaustion. The downscaling of watching television increased caregivers 'physical exhaustion. Furthermore, the downscaling of both activities had a negative impact on caregivers' perceived ability to provide ADL care and emotional support. This study triggers the need for more knowledge about the function of meaningful activities for residents, from a LTCF caregivers' perspective.

Association between apathy and satisfaction with meaningful activities in older adults with mild cognitive impairment: A population-based cross-sectional study.

OBJECTIVES: This cross-sectional study aimed to clarify the relationship between apathy, meaningful activities, and satisfaction with such activities of older adults with mild cognitive impairment (MCI). METHODS: We analyzed 235 older adults with MCI (≥65 years, mean age: 76.9 ± 6.4 years, women: 63.4%) who participated in a community-based health check survey (Tarumizu Study 2018). MCI was defined as at least 1.5 SD below the reference threshold (age- and education-adjusted score) on one or more of the computerized cognitive test including memory, attention, executive functions, and processing speed. Apathy symptoms were assessed using three of the 15 items of Geriatric Depression Scale. Participants selected meaningful activities from the 95 activities of the Aid for Decision-Making in Occupation Choice and evaluated their satisfaction and performance. RESULTS: Apathy in MCI was prevalent by 23.8%. The categories of meaningful activities revealed no difference, with, or without apathy. Logistic regression analysis showed that activity satisfaction was significantly associated with apathy after adjusting for age, sex, education, instrumental activities of daily living, depressive symptoms, and MCI subtype (OR, 0.62; 95% CI, 0.44-0.88, p = 0.008). CONCLUSIONS: Satisfaction with the activities that are deemed meaningful is associated with apathy among community-dwelling older adults with MCI.

Meaningful activities during COVID-19 lockdown and association with mental health in Belgian adults.

BACKGROUND: The spread of COVID-19 has affected people's daily lives, and the lockdown may have led to a disruption of daily activities and a decrease of people's mental health. AIM: To identify correlates of adults' mental health during the COVID-19 lockdown in Belgium and to assess the role of meaningful activities in particular. METHODS: A cross-sectional web survey for assessing mental health (General Health Questionnaire), resilience (Connor-Davidson Resilience Scale), meaning in activities (Engagement in Meaningful Activities Survey), and demographics was conducted during the first Belgian lockdown between April 24 and May 4, 2020. The lockdown consisted of closing schools, non-essential shops, and recreational settings, employees worked from home or were technically unemployed, and it was forbidden to undertake social activities. Every adult who had access to the internet and lived in Belgium could participate in the survey; respondents were recruited online through social media and e-mails. Hierarchical linear regression was used to identify key correlates. RESULTS: Participants (N = 1781) reported low mental health (M = 14.85/36). In total, 42.4% of the variance in mental health could be explained by variables such as gender, having children, living space, marital status, health condition, and resilience (ß = -.33). Loss of meaningful activities was strongly related to mental health (ß = -.36) and explained 9% incremental variance (R2 change = .092, p < .001) above control variables. CONCLUSIONS: The extent of performing meaningful activities during the COVID-19 lockdown in Belgium was positively related to adults' mental health. Insights from this study can be taken into account during future lockdown measures in case of pandemics.

Characterizing components of and attendance at resident-driven Housing First programming in the context of community-based participatory research.

AIMS: This secondary study characterized components of and engagement in the life-enhancing alcohol-management program (LEAP), which is resident-driven housing first programming. METHODS: We used a process akin to conventional content analysis to operationalize the LEAP according to its component activities. We used generalized linear modeling to identify predictors of LEAP activity participation and to predict alcohol and quality-of-life outcomes from participation in specific LEAP activities categories. RESULTS: Overall, 86% of participants attended at least one LEAP activity, which comprised three categories: administrative leadership opportunities, meaningful activities, and pathways to recovery. Employment status alone predicted LEAP activity attendance: Employed residents attended 88% fewer LEAP activities than unemployed residents. Participants who sought out more pathways to recovery activities were more likely daily drinkers and more impacted by alcohol-related harm. Those engaging in administrative leadership opportunities were overall less impacted by alcohol use and had a higher quality of life generally, and their alcohol outcomes further improved over time. CONCLUSIONS: Programming developed with Housing First residents was well-attended but could be made more inclusive by including evening programming to accommodate residents employed full time and engaging more severely impacted participants in administrative leadership activities, where the greatest benefits of programming were seen.

Identity and perceptions of quality of life in Alzheimer's disease.

BACKGROUND: With life expectancy on the rise and the baby boomer generation growing older, Alzheimer's disease (AD) will affect more individuals and families than ever before. Therefore, it is imperative that healthcare providers identify the objective and perceived factors which positively and negatively affect the experience of progressing through AD. AIM: The goal of this exploratory qualitative research is to begin to develop an in-depth description of the perceptions related to life satisfaction in early-to mid-AD from the patient and caregiver perspectives. METHODS: A convenience sample of four community-dwelling AD patients and caregivers were recruited from a local Alzheimer's Association support group. Semi-structured interviews were conducted together with participants and caregivers. RESULTS: The major findings of this study uncovered a process by which 1) changes in activity occur in response to the diagnosis 2) dyads discover new ways in which to mutually adapt and cope and 3) the person with dementia remains meaningfully engaged in their lives with a generally positive perception of quality of life (QoL). CONCLUSIONS: These preliminary findings are a promising line of research and have implications for Alzheimer's patients, their families, and person-centered care. By accounting for individual levels of baseline engagement and taking each patient's perspective into account, nurses have the ability to identify individual changes over time and positively impact the patient's QoL. Further studies with larger and more diverse samples are needed to expand upon this preliminary framework.

Effects of non-facilitated meaningful activities for people with dementia in long-term care facilities: A systematic review.

This systematic review sought to evaluate the effectiveness of non-facilitated meaningful activities for older people with dementia in long-term care facilities. Searches were conducted in PubMed; CINAHL; EMBASE; Web of science; PsycINFO; Cochrane; ProQuest; and ClinicalTrials.gov to identify articles published between January 2004 and October 2019. A total of six studies were included. Results implied that current randomised controlled trials or controlled trials about non-facilitated meaningful activities for people with living dementia in long-term care facilitates are limited, but those included in this review were of adequate methodological quality. Meaningful non-facilitated activities, such as music, stimulated family presence, animal-like social robot PARO/plush toy and lifelike dolls, may have beneficial effects on agitation, emotional well-being, feelings of pleasure, engagement, and sleep quality. However, there remains a lack of conclusive and robust evidence to support these psychological and physiological effects of non-facilitated meaningful activities for older people with dementia living in long-term care facilities by care staff.

From Social Exclusion to Supported Inclusion: Adults with Intellectual Disability Discuss Their Lived Experiences of a Structured Social Group.

BACKGROUND: People with intellectual disability often have few friends and experience social exclusion. Recognising this gap, supported social groups with the aim of inclusion and interdependence were created by a supported employment provider. METHODS: Interviews were undertaken with 10 adults with intellectual disability exploring their lived experiences of a supported social group. Data were analysed using descriptive phenomenology. RESULTS: Two themes emerged (i) supported engagement fosters wellbeing, and (ii) developing social belonging and connectedness. Participants not only acknowledged the support that they needed to participate, but also that the social group had changed their lives in many ways. CONCLUSIONS: Adults with intellectual disability want to socialise, have friends and be part of their community. For this to be achieved, they recognise the need to seek some form of support. With appropriate and targeted support, adults with intellectual disability can move from social exclusion towards supported inclusion and experience richer lives.

Better self-management and meaningful activities thanks to tablets? Development of a person-centered program to support people with mild dementia and their carers through use of hand-held touch screen devices.

BACKGROUND: To offer good support to people with dementia and their carers in an aging and Internet society the deployment of hand-held touch screen devices, better known as tablets, and its applications (apps) can be viable and desirable. However, at the moment it is not clear which apps are usable for supporting people with dementia in daily life. Also, little is known about how people with dementia can be coached to learn to use a tablet and its apps. METHODS: A person-centered program, with tools and training, will be developed that aims to support people with mild dementia and their (in)formal carers in how to use the tablet for self-management and meaningful activities. The program will be developed in accordance with the Medical Research Council's (MRC) framework for developing and evaluating complex interventions and the study will cover the following phases: a preclinical or theoretical (0) phase; a modeling phase (I) and the exploratory trial phase (II). The users (people with dementia and their carers) will be involved intensively during all these phases, by means of individual interviews, workshops, focus groups, and case studies. DISCUSSION: The iterative process inherent to this framework makes it possible to develop a user-oriented intervention, in this case a person-centered program, for the use of tablets in dementia care. Preparatory work will be done to perform a methodologically sound randomized controlled trial (RCT) in the near future, which aims to investigate the contribution of this person-centered program for tablet use to the quality of life of people with dementia and their carers.

Satisfaction With a Family-Focused Intervention for Mild Cognitive Impairment Dyads.

PURPOSE: This article describes satisfaction that persons with mild cognitive impairment (PwMCI) and their caregivers had with the Daily Enhancement of Meaningful Activity (DEMA) intervention. METHODS: This randomized controlled pilot study compared satisfaction (usefulness, ease of use, and acceptability) with DEMA (n = 17 dyads) to an information support (IS) control group (n = 19 dyads). Six biweekly sessions (two in person and four by telephone) were delivered by trained nurses. Data analysis included descriptive statistics, independent-sample t tests, and content analysis. FINDINGS: PwMCI receiving DEMA rated their satisfaction significantly higher (p = .033) than did the control group; there was no difference in satisfaction between caregivers across groups. Qualitative interview data supported the usefulness, ease of use, and acceptability of DEMA for both PwMCI and caregivers. CONCLUSIONS: Results documented PwMCI's satisfaction with DEMA as implemented by nurses to support PwMCI-caregiver dyads' engagement in meaningful activity. DEMA may need revision to increase satisfaction for caregivers. CLINICAL RELEVANCE: The DEMA intervention was evaluated as useful, easy to use, and acceptable to PwMCI and their caregivers based on positive mean ratings. The study findings provide preliminary support of DEMA as a means to improve quality of life by helping to support patient and caregiver engagement in meaningful activities and problem solving.

Development of an activities care crew to support patients.

Improving care for people with dementia in acute hospitals is a priority in the UK. The Royal Berkshire Hospital in Reading has implemented a range of initiatives, including environmental changes to older people's care wards, development of workforce skills and knowledge, engagement with third sector providers, use of volunteers, and the development of an activities care crew. This article focuses on the work of the activities care crew. The care crew formation, using monies from vacant posts, has supported the provision of one-to-one nursing and engagement of patients in meaningful activities. Overall, the initiatives have reduced the number of falls with serious harm, improved the experience of people with dementia and their families, and supported partnership working with patients, families and multidisciplinary teams.

Personalized interactive multimedia systems to support meaningful activities in dementia care: A systematic review To be published in: Archives of Gerontology and Geriatrics.

BACKGROUND AND OBJECTIVES: Interactive multimedia systems are widely used to enhance participation in meaningful activities for older people living with dementia. This review aims to analyze and synthesize current evidence regarding personalization of these systems, by considering the type of content included, the selection process and the experience of people living with dementia when interacting with the content. MATERIALS AND METHODS: In accordance with PRISMA guidelines (PROSPERO registration number blinded for review), a systematic search was undertaken across 4 databases. Meta-aggregation pooled data for synthesis. RESULTS: A total of 520 articles were identified from searches in four databases, and 15 were included in this review. Two classes of content were identified: personal, often autobiographical; and curated, carefully chosen generic content appropriate for a wider group of people in the demographic. Variety of content can act as a trigger for autobiographical memories. Personalized music enhanced a desire to engage and prompted meaningful interactions among participants. DISCUSSION AND IMPLICATIONS: Despite some differences in the selected studies, the findings enabled us outline key points to consider when personalizing interactive multimedia systems for people living with dementia. Further research should focus on studying the social condition of the target users during the personalization process and on the benefits for caregivers.

Designing technology to support greater participation of people living with dementia in daily and meaningful activities.

Background: People living with dementia should be at the center of decision-making regarding their plans and goals for daily living and meaningful activities that help promote health and mental well-being. The human-computer interaction community has recently begun to recognize the need to design technologies where the person living with dementia is an active rather than a passive user of technology in the management of their care. Methods: Data collection comprised semi-structured interviews and focus groups held with dyads of people with early-stage dementia (n = 5) and their informal carers (n = 4), as well as health professionals (n = 5). This article discusses findings from the thematic analysis of this qualitative data. Results: Analysis resulted in the construction of three main themes: (1) maintaining a sense of purpose and identity, (2) learning helplessness and (3) shared decision-making and collaboration. Within each of the three main themes, related sub-themes were also constructed. Discussion: There is a need to design technologies for persons living with dementia/carer dyads that can support collaborative care planning and engagement in meaningful activities while also balancing persons living with dementia empowerment and active engagement in self-management with carer support.

Participation in everyday activities among young adult relatives of parents with dementia - A qualitative study.

Previous research has shown that young adult relatives of parents with dementia experience strain through increased responsibility and changed relationships in the family with potential consequences for their emotional, mental and physical well-being. Less is known about how young adult relatives experience their participation in everyday activities typically associated with young adulthood and how their participation is affected by the parent´s dementia. This study explores young adult relatives' experiences of participation in everyday activities and how their participation was affected by having a parent with dementia. The study followed a qualitative, descriptive approach. Semi-structured individual interviews with 11 young adult relatives (aged 21 - 31) of parents with dementia were conducted. The interviews were analysed using Kirsti Malterud's iterative cross case analysis method 'Systematic text condensation'. The analysis identified three categories: Dilemmas of choosing, Not having a choice and Reversal of roles. The young adult relatives experienced dilemmas and constraints regarding participation in everyday activities usually related to young adulthood. They navigated situations where they were to choose between the parent with dementia and their own everyday activities and they often downgraded or cancelled participation in own activities related to leisure time, school, job and career. Moreover, their participation seemed affected by chores and responsibilities resulting in a lack of energy leading them to forego social activities in particular or change their choice of activities. The young adult relatives need help and support in their everyday lives. Health care professionals are encouraged to focus on relieving them from some of the responsibilities and practical tasks enabling them to live their own lives as young adults, while being part of the family and contributing towards the responsibilities and tasks with which they can cope.