The impact on employment and education of caregiving for a family member with young onset dementia: A scoping review.

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.

What happens when people develop dementia whilst working? An exploratory multiple case study.

PURPOSE: This study is an in-depth exploration of the unfolding experiences of five persons who developed dementia while still in paid work/employment, and of their significant others. Namely, we explore how they experienced the actions and decisions taken with respect to work, and what the consequences meant to them. METHODS: A qualitative longitudinal case study design with multiple cases was used, including five participants with dementia and significant others of their choice. Interviews were undertaken longitudinally and analysed with the Formal Data-Structure Analysis approach. RESULTS: The joint analysis resulted in two intertwined themes: 1) The significance and consequences of a dementia diagnosis: a double-edged trigger, and 2) Sensemaking and agency. The prevalent images of what dementia is, who can/cannot get it and what it will bring, were revealed as the critical aspects. Having the opportunity to make sense of what has happened and participate in decision-making, contributed decisively to the participants' experiences. CONCLUSIONS: Findings illustrate how a dementia diagnosis is alien in work-life, but once diagnosed, it may trigger self-fulfiling expectations based upon stereotypical understanding of dementia. A shift is needed from a deficit-focused perspective, to viewing people with dementia as citizens capable of agency.

Social Citizenship Through Out-of-Home Participation Among Older Adults With and Without Dementia.

There is limited empirical knowledge about how older adults living with dementia enact their social citizenship through out-of-home participation. This study aimed: (a) to investigate out-of-home participation among older adults with and without dementia in four countries and (b) to compare aspects of stability or change in out-of-home participation. Using a cross-sectional design, older adults with mild-to-moderate dementia and without dementia, aged 55 years and over, were interviewed using the Participation in ACTivities and Places OUTside the Home questionnaire in Canada (n = 58), Sweden (n = 69), Switzerland (n = 70), and the United Kingdom (n = 128). Data were analyzed using descriptive statistics and a two-way analysis of variance. After adjustment for age, diagnosis of dementia and country of residence had significant effects on total out-of-home participation (p < .01). The results contribute to policies and development of programs to facilitate social citizenship by targeting specific activities and places.

Out-of-home participation among people living with dementia: A study in four countries.

Social participation in out-of-home activities is important for people living with dementia, yet little is known about such participation. The aim of this study was to explore and compare out-of-home participation among people living with dementia in four countries by assessing different types of places of participation visited or no longer visited. A cross-sectional design was used to gather self-reported experiences concerning out-of-home participation among people with mild stage dementia living in Canada (n = 29), Sweden (n = 35), Switzerland (n = 35) and the UK (n = 64). Interviews were conducted using the Participation in ACTivities and places OUTside the Home for older adults (ACT-OUT) instrument. Participants still visited 16 (Median) places out of a possible total of 24, and they had abandoned 5 (Median) places. Neighbourhood was the place most participants still visited, whereas 50% of them had stopped going to a Sports facility, with no significant differences between country samples regarding how many participants had abandoned that place (Fisher's exact test, p > 0.01). There were significant differences between country samples in the frequency of present participation and abandonment of the Hospital, Dentist's office, Cemetery, Garden, and Forest (Fisher's exact test, all p < 0.01). Although the participants still visited a variety of places, they had stopped going to places previously visited, which indicates reductions in participation, posing an inherent risk to well-being. The similarities and differences across samples from the four countries suggest that healthcare services and access to public transport may contribute to the complex interactional process of out-of-home participation for people living with dementia. The findings highlight the need for initiatives targeting specific types of places to support continued participation in society, especially places at a higher risk of abandonment such as places for recreation and physical activity.

Associations between community participation and types of places visited among persons living with and without dementia: risks perception and socio-demographic aspects.

INTRODUCTION: Increasingly, literature has focused on community participation in places visited by persons living with and without dementia. Earlier research indicates that multiple factors, including socio-demographic aspects and risk perception may influence community participation. AIM AND METHODS: This cross-sectional, explorative study aims to inquire into how places visited, socio-demographic aspects and risks perception are associated with self-rated community participation for persons living with and without dementia (n = 70) in Switzerland. Data was collected through face-to-face interviews with questionnaires (ACT-OUT, MoCA, sociodemographic). First, we investigated whether the number of places visited was correlated with self-rated participation; then we added socio-demographic and risks perception factors with a bivariate analysis; and searched for a model using multinomial logistic regressions. RESULTS: For the group of participants living with dementia, risks of falling (p = .014) and of getting lost (p = .037) were significantly associated with self-rated participation. For the group of participants living without dementia, visiting places outside the home was significantly associated with self-rated participation, especially visiting places in domain D/places for recreational and physical activities (p = .005). DISCUSSION AND CONCLUSIONS: The results of exploring multiple factors and searching for a model highlights the complexity of community participation as a construct. Risks and visiting places for recreational and physical activities seem to play a role in self-rated participation. Mobile interviews might be better suited to gain in-depth understanding on community participation for persons living with dementia.

Communication and engagement as potentiality in everyday life between persons with young onset dementia living in a nursing home and caregivers.

OBJECTIVES: To explore communication and engagement in everyday situations between persons with young-onset dementia (YOD) living in a nursing home (NH) and the caregivers. METHODS: The study draws on ethnographic methods aligned with participatory design. Three residents with YOD living in a NH and eight staff members were recruited. A narrative approach was used for data collection and analysis. FINDINGS: Three narrative vignettes were developed representing everyday situations in which communication and engagement was enacted among residents and caregiver staff: (a) waiting for something to happen, (b) tensions about everyday communication, and (c) negotiating a combined living + working environment. The findings stress a paradoxical tension rooted in the NH as residence and workplace as well as place of calm and place of boredom. The everyday situations are interpreted differently from the perspective of the residents and staff. CONCLUSION: The identified paradox of planned and spontaneous situations influences communication and engagement in everyday life, and the potentiality for active engagement embedded in contexts of units for residents with YOD. The degree to which everyday activities and encounters are redefined and renegotiated is an important part of caregiving practices in NH settings for residents with YOD.

Working towards inclusion: Creating technology for and with people living with mild cognitive impairment or dementia who are employed.

Earlier diagnosis and longer working careers is resulting in more individuals being identified as having Mild Cognitive Impairment or Early Onset Dementia (MCI/EOD) when they are still in the workforce. While there is growing interest in the dementia research community and beyond to develop technologies to support people with dementia, the use of technology for and by people with MCI/EOD in the workplace has had very little attention. This paper presents a two-part study involving interviews and participatory sessions to begin to understand the workplace experiences and the role of technology among people living with MCI/EOD. We present our findings from working with seven people with MCI/EOD and two care partners to explore technology design. Our results indicate several similarities as well as a few differences between MCI/EOD and later-onset dementia with respect to challenges using technology and design considerations for supporting engagement and use of technology. Lessons learned through the process of working with people with MCI/EOD through participatory methods is presented along with recommendations to foster an inclusive, respectful, and empowering experience for participants with MCI/EOD.

Self-initiated management approaches in everyday occupations used by people with acquired cognitive impairment.

BACKGROUND: Striving to cope with day-to-day challenges is a basic human behaviour. Self-initiated management approaches provide a resource that has yet to be discovered and systematically used in occupational therapy practice. This resource might be especially important for people with dementia who are less likely to adopt management approaches initiated by others. AIMS/OBJECTIVES: Based on the findings of former studies on management and problem-solving actions among people with cognitive impairment, this article aims to identify and categorize the study participants' self-initiated management approaches and how these may be manifested in strategies in everyday occupations. MATERIAL AND METHODS: The study utilized a form of meta-synthesis; an aggregated analysis, where findings from 11 studies published 2004-2020 were compared and categorized, incorporating the views of participants with dementia/mild cognitive impairment, or acquired brain injury. RESULTS: Thirty strategies were identified and grouped into seven categories of management approaches, used in a variety of everyday occupations and situations. A majority of the strategies were found in both populations, suggesting that management approaches are more similar than different across populations with cognitive impairment. CONCLUSIONS AND SIGNIFICANCE: Attending to the rich variation of self-initiated management approaches/strategies among persons with cognitive impairment offers possibilities for developing occupational therapy interventions.

Does the purpose matter? A comparison of everyday information and communication technologies between eHealth use and general use as perceived by older adults with cognitive impairment.

BACKGROUND AND OBJECTIVE: Everyday information and communication technologies (EICTs) are increasingly being used in our society, for both general and health-related purposes. This study aims to compare how older adults with cognitive impairment perceive relevance and level of EICT challenge between eHealth use and general use. METHODS: This cross-sectional study includes 32 participants (65-85 years of age) with cognitive impairment of different origins (due to e.g., stroke or dementia). The Short Everyday Technology Use Questionnaire+ (S-ETUQ+) was used, providing information about the relevance of EICTs and measuring the EICT level of challenge. Data were analysed with descriptive statistics, standardized z-tests and Fisher's exact tests. The significance level was set to p < .05. RESULTS: The result shows that the perceived amount of relevant EICTs for eHealth use was lower in all 16 EICTs compared to those of general use. About the perceived level of challenge, a significant difference was detected in one of the seven included EICTs between eHealth use and general use. CONCLUSIONS: In this sample, all EICTs were perceived as having lower relevance for eHealth use compared to general use, suggesting that the purpose of using an EICT affects the perceived relevance of it. Also, once an EICT is perceived as relevant and used for eHealth purposes, there seem to be little to no differences in perceived challenge compared to the same EICT used for general purposes.Implications for rehabilitationAll stakeholders, including health care providers, need to be aware of the hindrances that come with digitalization, making it challenging to many citizens to make use of digital solutions.It is of great importance that social services including eHealth services be tailored to suit the individual/target group.Older adults may need support and an introduction to EICTs to discover the potential relevance of the specific device and/or service.

Familiarity and participation outside home for persons living with dementia.

Familiarity is important for persons living with dementia who participate outside home. When familiarity is challenged, such participation may be difficult. This ethnographic study clarifies how familiarity is experienced by persons with dementia in performing activities and visiting places, and how familiarity contributes to maintaining participation outside home. Nine participants were interviewed in their home and while visiting familiar places. Data were content analysed using a constant comparative method. The findings suggest that persons with dementia experience familiarity as continuous and whole, through occurrences that support personal territories. Landmarks and objects enhance the experience of familiarity. Familiarity that is continuously challenged may render participation outside home fragile.

Visiting Out-of-Home Places When Living With Dementia: A Cross-Sectional Observational Study: Visiter des lieux hors du domicile lorsque l'on vit avec une démence: étude transversale observationnelle.

BACKGROUND.: Persons living with dementia face a reduction of their life space outside home and disengagement from participation, linked to places visited. PURPOSE.: This study explored stability and change in perceived participation in places visited outside home and its relationship with occupational gaps among older adults. METHOD.: Older adults living with (n = 35) or without (n = 35) dementia were interviewed using the Participation in ACTivities and Places OUTside Home (ACT-OUT) questionnaire and the Occupational Gaps Questionnaire (OGQ). Data analysis used descriptive and inferential statistics. FINDINGS.: The group of people living with dementia reported significantly fewer places (p < .001) visited than the comparison group and having abandoned more places visited (p < .001) than the comparison group. The number of occupational gaps was significantly different between groups (p < .001). IMPLICATIONS.: Participation outside home is not influenced in a uniform and straightforward way for persons living with dementia; the shrinking world effect appears differently in relation to types of places.

Understanding exercise promotion in rheumatic diseases: A qualitative study among physical therapists.

Background: Physical therapists have unique expertise in planning, prescribing, and supporting exercise for patients with rheumatic diseases. Promoting exercise can be a challenge, but descriptions of physical therapists' experiences within the field of rheumatology are limited.Objective: The purpose of this study was to explore and describe ways of understanding exercise promotion among physical therapists working in rheumatology.Design and Method: A phenomenographic approach was used to analyze semi-structured interviews with 25 physical therapists working primarily within the field of rheumatology from eight different physical therapy departments at hospitals across Sweden.Results: Four ways of understanding exercise promotion were identified. These were named: exercise promotion as information and monitoring of the behavior, as facilitation of skills building, as co-creation of awareness, and as the development of independence and self-reflection.Conclusion: Physical therapists in rheumatology understand exercise promotion in various ways that differ with respect to comprehensiveness and patient-centeredness. The physical therapists' use of behavior change techniques serves different purposes in exercise promotion, varying from external control to self-management. The present results might thus be used to develop awareness, knowledge, and skills for more deliberate exercise promotion among physical therapists working with patients having rheumatic diseases.

The use of everyday information communication technologies in the lives of older adults living with and without dementia in Sweden.

Background: Increasingly services and interventions involve everyday information communication technologies (EICTs) in provision, however, use of EICTs among people with dementia is little known. Therefore, this study aimed to investigate the relevance, use, and ability to use EICTs between a group of older adults with dementia and a comparison group with no known cognitive impairment.Method: Interviews with 35 people with dementia, 34 comparison participants using the standardized Everyday Technology Use Questionnaire. Variables were compared using descriptive statistics, t-tests and correlation analyses.Results: Median 7 EICTs (maximum 31) were relevant to the group with dementia; significantly less than the comparison group's 11 (p< .05, d= 0.64). The difference in use appeared more pronounced (group with dementia 5, comparison group 10.5; p< .001, d= 0.93). Large, significant relationships were evident between ability to use technology, and relevant or used EICTs in the group with dementia. No such relationships in the comparison group.Conclusion: Differences in the amounts of EICTs relevant and used among people with and without dementia are further reflected in the dementia group's ability to use technology. Accommodating the demands that EICTs place on users and harnessing the dominant EICT relevancies and abilities of people with dementia better contributes towards an inclusive, dementia-friendly society.

Depression, everyday technology use and life satisfaction in older adults with cognitive impairments: a cross-sectional exploratory study.

RATIONAL: Life satisfaction is strongly associated with participation in everyday life activities. Yet, older adults with cognitive impairments have been found to experience difficulties in accessing and engaging in more complex everyday activities, especially, if these involve everyday technology. Considering the rapidly advancing technological landscape, this may substantially affect individuals' life satisfaction and their participation in meaningful community-based and home-based activities. OBJECTIVES: This study aimed to explore the associations between life satisfaction, ability to use everyday technology and number of relevant everyday technologies used in older adults (n = 117) with and without mild cognitive impairment (MCI) and Alzheimer's disease (AD). It also aimed to understand the role of depression, activity involvement and diagnosis regarding life satisfaction in this sample. METHOD: Descriptive statistics, Mann-Whitney U tests and t-tests were applied to compare those satisfied and those dissatisfied with life regarding ability to use everyday technology and number of relevant everyday technologies used. FINDINGS: The number of relevant community-based everyday technologies currently not used was significantly associated with being dissatisfied with life (p < 0.05). Further, depression and withdrawal from activities and interests significantly differed across life satisfaction groups, while no group differences were found regarding overall number of everyday technologies in use and ability to use everyday technology. CONCLUSION: Attention from healthcare professionals and researchers to early withdrawal from activities that rely on community-based everyday technologies is called for, especially in older adults with depression. Preventing everyday technology-related barriers in community life may increase life satisfaction.

Perceived risks, concession travel pass access and everyday technology use for out-of-home participation: cross-sectional interviews among older people in the UK.

BACKGROUND: The health-promoting qualities of participation as an opportunity for social and cognitive engagement are well known. Use of Everyday Technology such as Smartphones or ATMs, as enabling or disabling factors for out-of-home participation is however under-researched, particularly among older people with and without dementia. Out-of-home participation involves participation in places and activities outside of a person's home, in public space. Situated within the context of an increasingly technological society, the study investigated factors such as perceived risks, access to a concession travel pass and use of Everyday Technologies, and their relationship with out-of-home participation, among older people in the UK. METHODS: One hundred twenty-eight older people with and without dementia in urban and rural environments in the UK, were interviewed using the Participation in ACTivities and Places OUTside Home (ACT-OUT) Questionnaire and the Everyday Technology Use Questionnaire (ETUQ). Associations between Everyday Technology use, perceived risk of falling, functional impairment, access to a concession travel pass and out-of-home participation were investigated using ordinal regression. RESULTS: A higher probability of Everyday Technology use (Odds Ratio [OR] = 1.492; 95% Confidence Interval [CI] = 1.041-1.127), perceived risk of falling outside home (OR = 2.499; 95% CI = 1.235-5.053) and, access to a concession travel pass (OR = 3.943; 95% CI = 1.970-7.893) were associated with a higher level of out-of-home participation. However, other types of risk (getting lost; feeling stressed or embarrassed) were not associated with out-of-home participation. Having a functional impairment was associated with a low probability of a higher level of out-of-home participation (OR = .470; 95% CI = .181-1.223). Across the sample, 'outside home' Everyday Technologies were used to a higher degree than 'portable' Everyday Technologies which can be used both in and outside home. CONCLUSIONS: The study provides insights into perceived risks, access to a concession travel pass and use of Everyday Technologies, and their relationship with out-of-home participation, among older people in the UK. Increased knowledge about factors associated with out-of-home participation may help to guide targeted health and social care planning.

Social Participation in Relation to Technology Use and Social Deprivation: A Mixed Methods Study Among Older People with and without Dementia.

Social participation is a modifiable determinant for health and wellbeing among older people; however, social participation is increasingly dependent on technology use. This study investigated social participation in relation to Everyday Technology use and social deprivation of the living environment, among older people with and without dementia in the United Kingdom. Sixty-four people with dementia and sixty-four people without dementia were interviewed using standardized questionnaires: The Participation in ACTivities and Places OUTside Home Questionnaire and Everyday Technology Use Questionnaire. A mixed methods approach integrated statistical analyses and content analysis of free-text responses, through data visualizations. Small, statistically significant associations were found between social participation and Everyday Technology use outside home, for participants with dementia (Rs = 0.247; p = 0.049) and without dementia (Rs = 0.343; p = 0.006). A small, statistically significant association was identified between social participation and social deprivation in the living environment, among only participants with dementia (Rs = 0.267, p = 0.033). The content analysis and graphical joint display revealed motivators, considerations that require extra attention, and strategies for managing social participation. The results underline how Everyday Technology use can be assistive to social participation but also the need to consider social deprivation of the living environment, especially among people with dementia.

Test-retest reliability of the short version of the everyday technology use questionnaire (S-ETUQ).

Background: Everyday technologies (ET) such as smart phones, and internet banking are increasingly incorporated into daily activities. Therefore, valid assessments are needed to identify ability in ET use and to design and evaluate interventions.Aims: To evaluate and compare the stability over time (test-retest reliability) of measures generated with the short version of the Everyday Technology Use Questionnaire (S-ETUQ) in older adults with cognitive impairment or mild dementia.Materials and Methods: Data was collected with S-ETUQ at two occasions (m = 20.9 days in between) in a sample of (n = 73) older adults with cognitive impairment of different origin (n = 38) or mild dementia (n = 35). Stability of each participant's S-ETUQ measure was examined using standardised difference z-comparisons. The test-retest reliability coefficient of the S-ETUQ measures was determined by Intraclass Correlation Coefficients. Comparisons were performed using Mann-Whitney u-tests.Results: The S-ETUQ measures were statistically stable between the two occasions. Hence, the group of persons with cognitive impairment demonstrated slightly higher stability and fewer differences compared to the group with mild dementia. The ICCs (0.82-0.90) indicated good to excellent agreement.Conclusions: S- ETUQ can be used with older people with cognitive impairments of varying degree to gather reliable and precise information regarding their use of ET.

The perceived challenge of everyday technologies in Sweden, the United States and England: Exploring differential item functioning in the everyday technology use questionnaire.

Background: The changing technological environment is reflected in regular updates made to the everyday technology (ET) use questionnaire (ETUQ). Newly added ETs may not present comparable challenges across countries and diagnoses.Aims: To identify whether country context, or dementia diagnosis, impact ETs' challenge level.Material and methods: 315 older adults from three countries were included; Sweden (n = 73), United States (n = 114), England (n = 128), and had a confirmed diagnosis of mild dementia (n = 99) or no known cognitive impairment (n = 216). Differential Items Functioning (DIF) analysis was performed on 88 ETs included in the ETUQ by country and diagnosis. The impact of DIF was evaluated in a Differential Test Functioning (DTF) analysis.Results: Nine items (10.2%) in the ETUQ showed statistically significant DIF between countries; five of which were public space ETs and none of which were information and communication technologies (ICTs). Three ICT items, and no others, showed significant DIF by diagnosis. The items' DIF was shown to have no impact upon person measures of ability to use ET in the DTF.Conclusions and significance: The utility of the ETUQ in occupational therapy practice and research internationally is highlighted through the stability of the challenge hierarchy and lack of impact on person measures.

How accessible are grocery shops for people with dementia? A qualitative study using photo documentation and focus group interviews.

BACKGROUND: People with dementia who live in ordinary housing need to perform activities outside the home such as visiting friends, talking walks and doing grocery shopping. This article identifies and examines characteristics that may influence accessibility in the space of a grocery shop as perceived by people with dementia. METHODS: This is a qualitative study with a grounded theory approach. The data collection was done with two different methods. It started with photo documentation and continued with focus group interviews in combination with photo elicitation. Data from both photo documentation and focus groups were analysed according to a grounded theory approach. RESULTS: The categories "illogical arrangement", "overload of products, information and people", "visual illusions" and "intrusive auditory stimuli" showed characteristics in the grocery shop that influenced how accessible and usable the informants experienced a shop to be. Furthermore, personal capacities in relation to the specific characteristics of the grocery shop space had an influence on how accessible and usable the informants experienced the grocery shop to be. Capacities to find, stay focused and concentrated, meet stress, remember, interpret and discriminate sensory impressions through hearing and sight came to the fore as important. CONCLUSIONS: Characteristics of both the shop and the person need to be taken into account when supporting people with dementia in grocery shopping.

Everyday technologies and public space participation among people with and without dementia.

BACKGROUND.: Occupational therapists support everyday technology use; however, it is necessary to consider the challenges that people with dementia encounter with everyday technologies when participating in various places within public space. PURPOSE.: The purpose of the study was to explore stability and change in participation in places visited within public space in relation to the relevance of everyday technologies used within public space. METHOD.: People with dementia (n = 35) and people with no known cognitive impairment (n = 34) were interviewed using the Participation in Activities and Places Outside Home Questionnaire and the Everyday Technology Use Questionnaire. Data analysis used modern and classical test theory. FINDINGS.: Both samples participated in places within public space; however, participation and relevance of everyday technologies were significantly lower for the dementia group. IMPLICATIONS.: To enable participation, occupational therapists need to be aware of challenges that technologies and places within public space present to people with dementia.