ICT-based applications to improve social health and social participation in older adults with dementia. A systematic literature review

ABSTRACT

Objectives: Information and communication technologies (ICT) developers, together with dementia experts have created several technological solutions to improve and facilitate social health and social participation and quality of life of older adults living with dementia. However, there is a need to carry out a systematic literature review that focuses on the validity and efficacy of these new technologies assessing their utility to promote ‘social health’ and ‘active ageing’ in people with dementia.

Method: Searches in electronic databases identified 3824 articles of which 6 met the inclusion criteria and were coded according to their methodological approach, sample sizes, type of outcomes and results.

Results: Six papers were identified reporting the use of 10 different interventions with people with dementia. Qualitative studies (four) showed a benefit of the use of technologies to foster social participation in people with dementia. At the same time, barriers to a widespread use of these technologies in this population were identified. A quantitative study and a mixed-method study with quantitative outcomes showed that ICT-based interventions promote more social behaviours than non-technology-based interventions.

Conclusions: In the last years, several technological devices for living independently and fostering social health and social participation in people with dementia have been developed. However, specific outcome measures to assess social health and social participation are needed. Even though the analysed studies provided some evidence-base for the use of technology in this field, there is an urge to develop high quality studies and specific outcome measures.     

Digging for Dementia: Exploring the experience of community gardening from the perspectives of people with dementia

ABSTRACT

Objectives: The study sought to explore the lived experiences of people with dementia who participate in community-based gardening programmes.

Methods: A collaborative gardening project was conducted over six weeks at a day centre for people with dementia. Six participants were recruited from the centre's attendees. Each session was co-designed by participants. Semi-structured group interviews were conducted each week, and researcher observations were documented. Semi-structured interviews were also conducted with the centre's staff to explore their views and to contextualise gardening participants’ experiences. Data were analysed inductively using thematic analysis. This paper focuses upon three of the study's emergent themes: identity, agency, and community.

Results: The findings revealed that for people with dementia, gardening is not merely a matter of enjoying time outdoors; it is a forum for the articulation of identity and selfhood and expression of agency, and can facilitate the development of new social bonds based upon shared interests, rather than a shared diagnosis.

Conclusion: Gardening-based interventions can offer more than simply facilitating outdoor engagement and promoting social interaction. When conditions are right, gardening can be an effective vehicle for the promotion of social citizenship and expression of selfhood and agency in dementia.     

Using telepresence for social connection: views of older people with dementia,families, and health professionals from a mixed methods pilot study

Abstract

Objectives: To explore the acceptability of telepresence robots in dementia care from the perspectives of people with dementia, family carers, and health professionals/trainees, and investigate the utility of a social presence assessment tool, the Modified-Temple Presence Inventory (Modified-TPI), for people with dementia.

Method: A mixed-methods pilot study conducted in a social robotics laboratory. Three participant groups (n?=?22) – dyads of people with dementia and their carers (n?=?5 respectively), and health professionals/trainees (n?=?12) – participated in individual one-off intervention sessions with the telepresence robot, Giraff, with follow-up interviews. Sessions covered how to use Giraff, followed by interactive practice in making a video-call involving conversation and manoeuvring of Giraff. Participants with dementia experienced receiving a call made by their carer; healthcare professionals/trainees experienced making and receiving a call. Outcomes of interest were sense of presence [Modified-TPI], affective response (International Positive and Negative Affect Schedule [I-PANAS-S]; Observable Displays of Affect Scale [ODAS]), and attitudes and reactions to Giraff (semi-structured interviews).

Results: Participants reported a sense of authenticity and social connection through the experience. They indicated positive social presence through Giraff, and significantly higher positive (mean score 18.77; ±4.00) than negative affect (mean score 8.05; ±1.76) on the I-PANAS-SF, and on the facial display subscale of the ODAS (positive – mean score 15.50; ±3.51 versus negative – mean score 4.00; ±0.00).

Conclusion: Telepresence has potential use in situations where people with dementia require social connection. Studies with larger sample sizes, varied characteristics, and cost-effectiveness analysis are needed to inform the application of telepresence in healthcare practice.     

Suicidal ideation in family carers of people with dementia

Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors.

Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, self-efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support.

Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression.

Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers.     

‘Old and ill’: death anxiety and coping strategies influencing health professionals' well-being and dementia care

Objectives: This paper examined the psychological factors that influence the well-being of health professionals who work with people with dementia and the types of care (person-centred or task-oriented) provided to these patients.

Methods: The literature was reviewed to identify the factors influencing the well-being of, and types of care provided by, health professionals working with people experiencing dementia.

Results: Based on our review of the literature, we propose that approaches to care and the well-being of health professionals working with dementia patients are influenced by the characterisation of dementia as a terminal illness that typically occurs in older people. Drawing upon terror management theory, we argue that exposure to dementia patients is likely to promote awareness of one's own mortality and death-related anxiety. A theoretical model is presented which posits that health professionals working in dementia care draw on experiential avoidance to manage this anxiety. Both death anxiety, and coping strategies, such as experiential avoidance, used to manage this anxiety may influence health professionals' approaches to care of, and attitudes towards, dementia patients. We also suggest a bi-directional relationship between health professionals' approaches to care and well-being.

Conclusion: Recommendations are made regarding future directions for research and implications for training of health professionals providing direct service or consultation in dementia care.     

Association between perceived social stigma against mental disorders and use of health services for psychological distress symptoms in the older adult population: validity of the STIG scale

Objectives: To document the reliability, construct and nomological validity of the perceived Social Stigmatisation (STIG) scale in the older adult population.

Design: Cross-sectional survey.

Setting: Primary medical health services clinics.

Participants: Probabilistic sample of older adults aged 65 years and over waiting for medical services in the general medical sector (n = 1765).

Measurements: Perceived social stigma against people with a mental health problem was measured using the STIG scale composed of seven indicators.

Results: A second-order measurement model of perceived social stigma fitted adequately the observed data. The reliability of the STIG scale was 0.83. According to our results, 39.6% of older adults had a significant level of perceived social stigma against people with a mental health problem. Results showed that the perception of social stigma against mental health problems was not significantly associated with a respondent gender and age. Results also showed that the perception of social stigma against the mental health problems was directly associated with the respondents’ need for improved mental health (b = ?0.10) and indirectly associated with their use of primary medical health services for psychological distress symptoms (b = ?0.07).

Conclusion: Results lead us to conclude that social stigma against mental disorders perceived by older adults may limit help-seeking behaviours and warrants greater public health and public policy attention. Also, results lead us to conclude that physicians should pay greater attention to their patients’ attitudes against mental disorders in order to identify possible hidden mental health problems.     

Caregiver profiles in dementia related to quality of life,depression and perseverance time in the European Actifcare study: the importance of social health

ABSTRACT

Objectives: To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare.

Methods: A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time.

Results: A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p < 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers' age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled ‘older low strain’, ‘older intermediate strain’, ‘older high strain’, ‘younger low strain’ and ‘younger high strain’.

Conclusion: Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs.     

Supporting family dementia caregivers: testing the efficacy of dementia care management on multifaceted caregivers’ burden

ABSTRACT

Objectives: Current research suggests that dementia care management (DCM) can decrease burden and associated health impairments of caregivers. The objective of this secondary analysis is to investigate the impact of DCM on multifaceted caregivers’ burden dimensions by differentiating between objective and subjective burden.

Methods: A sample of n = 317 dyads of caregivers and community-dwelling people with dementia (PwD) participated in a general practitioner-based, cluster-randomized intervention trial (Identifier:NCT01401582) with two arms and comprehensive data assessment at baseline and 12-month follow-up. Data provided by the caregiver included an inventory with 88 items in 20 different dimensions.

Results: Caregivers in the intervention ‘DCM’ group showed decreased caregiver burden, especially in caregivers’ objective burden due to caring (i.e. emotional support), caregivers’ subjective burden due to behavior change (i.e. cognition, aggression and resistance, depression, late symptoms) and caregivers’ subjective burden due to perceived conflicts between needs and responsibilities to care (i.e. financial losses) compared to caregivers in the control ‘care as usual’ group, which showed significant increased caregiver burden after 12 months.

Conclusion: Our findings support evidence for the effectiveness of DCM to lower family dementia caregivers' burden in multifaceted dimensions.     

Association between social interaction and affect in nursing home residents with dementia

Background: Social interactions that lead to positive affect are fundamental to human well-being. However, individuals with dementia are challenged to achieve positive social interaction. It is unclear how social interactions influence affect in people with dementia. This study examined the association between social interactions and affect in nursing home residents with dementia.

Methods: This repeated measures study used baseline data from a clinical trial in which 126 residents from 12 nursing homes were enrolled. Participants were video recorded twice daily on five days. Ratings of social interaction and affect were taken from the videotapes using the Interacting with People subscale of the Passivity in Dementia and the Philadelphia Geriatric Center Apparent Affect Rating Scale. Linear mixed models were used for analysis.

Results: Social interaction was significantly related to higher interest and pleasure at within- and between-person levels. Social interaction significantly predicted anxiety and sadness at the between-person level only. Residents with higher cognitive function also displayed greater pleasure. Greater interest and anxiety was evident during the afternoon hours.

Conclusions: This study supports the impact of social interactions on positive and negative affect. Findings can guide intervention development, aimed at promoting positive social interactions and improving affect for people with dementia.     

Individualized formulation-led interventions for analyzing and managing challenging behavior of people with dementia – an integrative review

Objective: Individualized formulation-led interventions offer a promising approach for analyzing and managing challenging behaviors in people with dementia. Little is known about which individualized formulation-led interventions exist and what effects these interventions have on people with dementia and their caregivers. Therefore, the review aims to describe and examine existing interventions and to review their evidence.

Methods: An integrative review of individualized formulation-led interventions for managing challenging behavior in people with dementia was conducted. PUBMED, PsycINFO [EBSCO] and CINAHL [EBSCO] databases were searched between February and April 2014 using key terms related to dementia, challenging behavior and individualized formulation- led interventions. The literature search was limited to German and English publications published from 1995. No limitations were placed on the type of paper, type of study design and stage of disease or setting. 37 relevant papers that met the inclusion criteria were included in this review.

Results: The literature review provided 14 different individualized formulation-led interventions. The effects on people with dementia were diverse, as only half of the studies showed a significant reduction in behaviors compared with the control group. Family caregivers felt less upset about the challenging behavior and more confident in their ability to manage the behavior.

Conclusion: There is a clear need for further research on individualized formulation-led interventions. The results of this review have the potential for developing interventions and for designing methodological robust evaluation studies that take into account the effectiveness of individualized formulation-led interventions on patient and caregiver outcomes.     

A longitudinal study on the COVID-19 pandemic and its divergent effects on social participation and mental health across different study groups with and without mental disorders

Purpose

With the rapid spread of COVID-19 and the restrictions imposed in many parts of the world, there is growing concern about its impact on mental health. This longitudinal study investigated the social participation, social inclusion and psychological well-being in adults with and without mental disorders before the beginning of the pandemic, as well as during and after strict lockdown restrictions in Germany.

Methods

The sample (n = 106) consisted of three groups: participants with a chronic mental disorder, with an acute mental disorder, and without a mental disorder at the time of the initial survey. Parameters of interest were assessed using the Measure of Participation and Social Inclusion for Use in People with a Chronic Mental Disorder (F-INK), the Index for the Assessment of Health Impairments (IMET) and the Brief Symptom Inventory (BSI-18).

Results

The perceived impairments in social participation and the associated changes in behaviour varied depending on the presence of a mental disorder at the time of the initial survey and were largely temporary, i.e. limited to the period of strict lockdown restrictions. We found no further detrimental effects on mental health 4 weeks after lockdown or later, when a policy of physical distancing was in place.

Conclusion

Overall, our findings suggest a general resilience to the official restrictions and measures as well as the pandemic itself. However, further efforts are needed to improve the situation of people with chronic mental disorders and their limited opportunities for social participation.

     

Associations between the dimensions of perceived togetherness,loneliness, and depressive symptoms among older Finnish people

ABSTRACT

Objectives: We studied the associations between perceived togetherness, depressive symptoms, and loneliness over a six-month period among 222 people aged 75–79 who reported loneliness or depressive mood at baseline.

Method: The present cross-lagged models utilized baseline and six-month follow-up data of a randomized controlled trial that examined the effects of a social intervention on loneliness and depression (ISRCTN78426775). Dimensions of perceived togetherness, i.e. attachment, social integration, guidance, alliance, nurturance, and reassurance of worth, were measured with the Social Provisions Scale, depressive symptoms with a short form of the Geriatric Depression Scale, and loneliness with a single item.

Results: After controlling for baseline loneliness and depressive symptoms, baseline higher attachment in all participants and baseline higher opportunity for nurturance in the social intervention group predicted lower depressive mood at follow-up. No cross-lagged associations between the dimensions of perceived togetherness at baseline and loneliness at follow-up were observed. In addition, depressive symptoms and loneliness at baseline tended to negatively predict the dimensions of perceived togetherness at follow-up.

Discussion: Depressive symptoms and loneliness appear to be precursor for perceived togetherness, rather than dimensions of perceived togetherness to be antecedents of loneliness and depressiveness among older people.     

A step back from the edge: empirical modeling of the role of social integration on suicide and associated deleterious health outcomes across adolescents from six middle-income countries

Purpose

There is economic importance to stimulating awareness about preventing adolescent suicide and other associated deleterious mental and behavioral health outcomes, especially the long-term costs from lost productivity. However, the presence of stigma and poor healthcare reporting systems which often prevent data access have frequently limited research into these topics in low-and-middle income (LMICs) countries. The majority of existing research on these topics using LMICs data primarily focuses on prevalence rates and basic correlational associations, and is often a-theoretic. Empirically rigorous work, mostly found using data from the developed world, has primarily relegated suicide into a box of utility-maximization-based decisions. Social integration theory may be a more relevant approach for researching the mitigating factors to deleterious heath behaviors among adolescents in LMICs.

Methods

Using data from the Global School-based Student Health Survey (GSHS) of six different countries, we estimate a reduced-form, simultaneous model incorporating specialized clustering to determine the influence of social integration on five different deleterious health outcomes, including three levels of suicidal behavior.

Results

Robust results indicate that positive parenting and social exclusion reduce and increase the likelihood of all outcomes, respectively, among both pooled and individual country samples.

Conclusion

Such results provide an impetus for pursuing interventions in LMICs, which focus on social-based, multi-level approaches. Such interventions could include such elements as peer-to-peer training support and awareness/promotion of mental health among parents of adolescents.

     

Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

ABSTRACT

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL).

Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.

Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both.

Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.     

Improving mental health pathways and care for adolescents in transition to adult services (IMPACT): a retrospective case note review of social and clinical determinants of transition

Background

Poor transitions to adult care from child and adolescent mental health services may increase the risk of disengagement and long-term negative outcomes. However, studies of transitions in mental health care are commonly difficult to administer and little is known about the determinants of successful transition. The persistence of health inequalities related to access, care, and outcome is now well accepted including the inverse care law which suggests that those most in need of services may be the least likely to obtain them. We sought to examine the pathways and determinants of transition, including the role of social class.

Method

A retrospective systematic examination of electronic records and case notes of young people eligible to transition to adult care over a 4-year period across five Health and Social Care NHS Trusts in Northern Ireland.

Results

We identified 373 service users eligible for transition. While a high proportion of eligible patients made the transition to adult services, very few received an optimal transition process and many dropped out of services or subsequently disengaged. Clinical factors, rather than social class, appear to be more influential in the transition pathway. However, those not in employment, education or training (NEET) were more likely (OR 3.04: 95% CI 1.34, 6.91) to have been referred to Adult Mental Health Services (AMHS), as were those with a risk assessment or diagnosis (OR 4.89: 2.45, 9.80 and OR 3.36: 1.78, 6.34), respectively.

Conclusions

Despite the importance of a smoother transition to adult services, surprisingly, few patients experience this. There is a need for stronger standardised policies and guidelines to ensure optimal transitional care to AMHS. The barriers between different arms of psychiatry appear to persist. Joint working and shared arrangements between child and adolescent and adult mental health services should be fostered.

     

Integration of mental health into primary healthcare in low-income countries: Avoiding medicalization

Abstract

Since 2008 the World Health Organization (WHO), through its mental health Gap Action Programme, has attempted to revitalize efforts to integrate mental health into non-specialized (e.g. primary) healthcare. While this has led to renewed interest in this potential method of mental health service delivery, it has also prompted criticism. Some concerns raised are that it would contribute to the medicalization of social and psychological problems, and narrowly focus on primary care without sufficient attention given to strengthening other levels of the healthcare system, notably community-based care and care on district levels. This paper discusses seven elements that may be critical to preventing inadvertently contributing to increasing a narrow biomedical approach to mental healthcare when integrating mental health into non-specialized healthcare: (1) using task shifting approaches within a system of stepped care, (2) ensuring primary mental healthcare also includes brief psychotherapeutic interventions, (3) promote community-based recovery-oriented interventions for people with disabling chronic mental disorders, (4) conceptualizing training as a continuous process of strengthening clinical competencies through supervision, (5) engaging communities as partners in psychosocial interventions, (6) embedding shifts to primary mental healthcare within wider health policy reforms, and (7) promoting inter-sectoral approaches to address social determinants of mental health.     

The dementia social care workforce in England: secondary analysis of a national workforce dataset

Objective: Little is known about the social care workforce supporting people with dementia in England. This article seeks to compare the characteristics of people employed in the social care sector supporting people with dementia with other members of the social care workforce.

Methods: This article reports on the secondary analysis of a new national workforce dataset from England covering social care employees. Secondary analysis of this dataset was undertaken using 457,031 unique workers’ records.

Results: There are some important differences between the dementia care workforce and other parts of the social care workforce in respect of the dementia care workforce being more likely to be female, to work part-time, to be employed by agencies and to be less qualified. Many work for medium-sized care businesses and in people's own homes. The findings are set in the context of efforts to increase training and skills.

Conclusion: Knowledge of the social care workforce is relevant to care quality and should be borne in mind when planning interventions and commissioning services.     

Soutien social,dépression et estime de soi chez les personnes âgées : les résultats d’une analyse en cluster

ObjectiveThis study investigated the relation in later life between social support and different mental health variables: depression and self-esteem. Social support was considered according to Cutrona and Russell's approach, which includes six dimensions: attachment, social integration, reassurance of worth, reliable alliance, guidance, and opportunity for nurturance. Several authors attributed to social support a major protective role in mental health. In fact, different links between social support and mental health variables were found in adulthood. More and more studies deal with social support in later life. In particular, the protective role of social support in stressful live events and its relation to mental health or illness have been examined. The objective of this study was to clarify the links between social support, depression and self-esteem in later life, with an alternative statistical method.MethodA cluster analysis was performed in order to group together older persons on the basis of their social support level. Ninety-three French older people living in their home were recruited, with a mean age of 70.72 (SD: 7.06). The social support was assessed with Caron’ social support scale (The Social Provision Scale) which measures the six functions of social relationships. Depression and self-esteem were evaluated respectively with the Center for Epidemiologic Studies Depression Scale (CES-D) and the Rosenberg Self-Esteem Scale. Cluster analysis was chosen because it allows to bound natural groupings within data and to determine homogeneous groups inside the sample of the study. Then, ANOVA were performed in order to compare these groups as for their depression and self-esteem scores.ResultsFirst, results revealed three social support profiles or groups: High social support level, Moderate social support level and Low social support level. Group with high social support level presents high level for all dimensions of social support: attachment, social integration, reassurance of worth, reliable alliance, guidance, and opportunity for nurturance. In addition, groups with moderate and low levels of social support are characterized respectively by moderate and low levels for all dimensions of social support. Second, different relationships of these profiles with depression and self-esteem were found. The older persons with high level of social support present a low depression level associated high self-esteem. Moreover, participants with moderate or low social support profile present high depression and low self-esteem levels.ConclusionThe relationship between social support and mental health was brought to light. The clinical implications and possible interventions are discussed. In particular, different methodological and conceptual approaches of social support interventions are evoked, such as interventions, which include family, friends or peers.