Joining forces to improve psychosocial care for people with cognitive deficits across diagnoses: social health as a common framework

Abstract

Cognitive deficits such as memory problems have a major impact on independence in daily life and participation in society in several populations, such as people with dementia, brain injury (i.e. stroke) or a severe mental illness such as schizophrenia. Similarities in the impact on participation and well-being have resulted in the development of comparable psychosocial interventions across populations, aiming to support people to adapt to cognitive deficits or by adapting the environment. These interventions are developed separately, without using the expertise in other fields. We argue that each of the fields and the field of psychosocial care in general would benefit from closer collaboration on development and evaluation of innovative psychosocial interventions. Collaboration has been complicated by the use of different care models and theoretical frameworks, each with their own terminology. The concept of social health - the ability to participate in work or other meaningful activities and to feel healthy despite a condition - translates to the leading care models within the fields of dementia, brain injury and severe mental illness. The concept of social health provides a common language and framework. In this paper, we elaborate on strategies for collaboration using examples of interventions to improve social health.     

Early counselling and support for patients with mild Alzheimer's disease and their caregivers: a qualitative study on outcome

Objectives: The aim of this qualitative study was to identify and analyse the participants' experienced outcome of an intensive structured psychosocial intervention programme with tailored counselling, education and support groups for home-living patients with mild Alzheimer's disease and their spousal caregivers. Method: Data were collected by semi-structured in-depth interviews conducted separately with each person in 10 couples before the intervention and 1-3 months after completed intervention. For the analysis, a template organizing style of interpretation was used. Results: The analysis revealed that patients found support groups relevant: they found it stimulating to be with peers, it supported their self-esteem, and it supported them in finding new ways of managing everyday life and social relations. During and after the intervention, caregivers were better able to cope with the challenges their partner's disease involved, and they were able to face everyday life and social relations with more serenity and competence. After the intervention, both patients and caregivers sought suitable support groups they could join as a permanent activity and caregivers sought permanent counselling. Conclusion: Early tailored counselling and support may improve patients' and caregivers' opportunities to adapt to the challenges of Alzheimer's disease and to maintain well-being.     

Effects of combined intervention programmes for people with dementia living at home and their caregivers: a systematic review

OBJECTIVE: This study reviews the evidence for effects of combined intervention programmes for both the informal caregiver and the person with dementia. METHOD: Systematic review. Electronic databases and key articles were searched for effect studies of combined programmes, published between January 1992 and February 2005. The resulting 52 reports were scored according to set inclusion criteria. RESULTS: Twenty five reports relating to 22 programmes met the inclusion criteria. Various aspects of caregivers' mental health and burden were studied. Best results were obtained regarding general mental health. Other aspects often showed modest and varying results. Caregivers' competence was less often addressed. The effects on the cognitive and physical functioning, behavioural problems and survival of the persons with dementia were modest and inconsistent, whereas their mental health is positively affected and admittance to long stay care is often delayed. CONCLUSION: Combined programmes may improve some, not all, aspects of functioning for caregiver and person with dementia. Care professionals must define their programme goals and target groups before advising their clients on a combined programme. Research may focus on the effects of programmes that were introduced fairly recently and on subgroups of caregivers (female caregivers, depressed caregivers and people with dementia, and minorities).     

Social support and well-being in dementia family caregivers: The mediating role of self-efficacy

Objectives: The study investigated self-efficacy as a possible mediator of the relationship between the social support and depressive symptoms of primarily informal caregivers, mainly family members, of patients with dementia in Hong Kong.

Method: One hundred and thirty-four caregivers were interviewed. Path analyses were conducted using a self-efficacy scale that consists of three subscales assessing three domains of caregiving self-efficacy. Self-efficacy for obtaining respite, responding to disruptive patient behaviours, and controlling upsetting thoughts about caregiving were measured.

Results: Results showed that self-efficacy acted as a partial mediator between social support and depressive symptoms of these caregivers.

Conclusion: Findings suggest that self-efficacy may function as a mechanism through which social support influences depressive symptoms, and the importance of this self-efficacy mechanism can be domain-specific.     

Stroke survivor cognitive decline and psychological wellbeing of family caregivers five years post-stroke: a cross-sectional analysis

Background: Family members frequently provide long-term care for stroke survivors, which can lead to psychological strain, particularly in the presence of cognitive decline.

Objectives: To profile anxious and depressive symptoms of family caregivers at 5 years post-stroke, and to explore associations with stroke survivor cognitive decline.

Methods: As part of a 5-year follow-up of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) cohort of stroke survivors, family members completed a self-report questionnaire. Symptoms of anxiety and depression were assessed using the HADS-A and CES-D. Cognitive decline in stroke survivors was assessed from the caregiver’s perspective using the IQCODE, with cognitive performance assessed by the MoCA. Data were analyzed using logistic regression models.

Results: 78 family members participated; 25.5% exhibited depressive symptoms, 19.4% had symptoms of anxiety. Eleven stroke survivors (16.7%) had evidence of cognitive decline according to both the IQCODE and MoCA. Family members of stroke survivors with cognitive decline were significantly more likely to report symptoms of depression [age-adjusted OR (95% CI): 5.94 (1.14, 30.89)] or anxiety [age-adjusted OR (95% CI): 5.64 (1.24, 25.54)] than family members of stroke survivors without cognitive decline.

Conclusions: One-fifth of family caregivers exhibited symptoms of anxiety and one-quarter symptoms of depression at 5 years post-stroke. Stroke survivor cognitive decline was significantly associated with both depressive and anxious symptoms of family caregivers. Family members play a key role in the care and rehabilitation of stroke patients; enhancing their psychological wellbeing and identifying unmet needs are essential to improving outcomes for stroke survivors and families.     

Social participation predicts cognitive functioning in aging adults over time: comparisons with physical health,depression, and physical activity

Objectives: Several risk and protective factors are associated with changes in cognitive functioning in aging adults – including physical health, depression, physical activity, and social activities – though the findings for participation in social activities are mixed. This study investigated the longitudinal association between social participation and two domains of cognitive functioning, memory and executive function. A primary goal of our analyses was to determine whether social participation predicted cognitive functioning over-and-above physical health, depression, and physical activity in a sample with adequate power to detect unique effects.

Method: The sample included aging adults (N = 19,832) who participated in a large, multi-national study and provided data across six years; split into two random subsamples. Unique associations between the predictors of interest and cognitive functioning over time and within occasion were assessed in a latent curve growth model.

Results: Social participation predicted both domains of cognitive functioning at each occasion, and the relative magnitude of this effect was comparable to physical health, depression, and physical activity level. In addition, social participation at the first time point predicted change in cognitive functioning over time. The substantive results in the initial sample were replicated in the second independent subsample.

Conclusion: Overall, the magnitude of the association of social participation is comparable to other well-established predictors of cognitive functioning, providing evidence that social participation plays an important role in cognitive functioning and successful aging.     

Meditation-based interventions for family caregivers of people with dementia: a review of the empirical literature

Objectives: Providing care for a family member with dementia is associated with increased risk of adverse mental health sequelae. Recently, interventions utilising meditation-based techniques have been developed with the aim of reducing psychological distress among dementia caregivers. The present review aimed to critically evaluate the extant empirical literature in order to determine: (1) whether meditation-based interventions can reduce depression among dementia caregivers and (2) whether meditation-based interventions can reduce subjective burden among dementia caregivers.

Method: After adhering to inclusion and exclusion criteria, a total of eight studies were included in the present review. Methodological quality was assessed using one of two scales dependent on study design.

Results: The results provide tentative evidence that meditation-based interventions do indeed improve levels of depression and burden in family dementia caregivers.

Conclusions: The review highlighted the strengths and weakness of the studies’ methodological designs. Whilst this novel review offers evidence in support of meditation-based interventions to improve the psychological distress of family dementia caregivers, future research should direct efforts to conduct larger scale, more rigorous studies. Clinical implications of the findings are also discussed.     

Social factors and depression in carers of people with dementia

BACKGROUND: Research has highlighted the influence of psychosocial factors on the wellbeing of carers of people with dementia. This study aimed to investigate the interrelationships between life events, depression and social support in carers of people with dementia. METHOD: Participants were 72 carers of people with dementia. They were interviewed using the Bedford College Life Events and Difficulties Schedule and the Geriatric Depression Scale. RESULTS: The results showed that 31 (43%) of carers were depressed. Factors associated with depression in carers were a lack of confiding relationship, depression in the person with dementia, and living with the person with dementia. CONCLUSIONS: Carers of people with dementia appear more vulnerable to depression in the context of the caring experience rather than threatening life events.     

TANDEM: Communication training for informal caregivers of people with dementia

Objectives: Dementia increasingly diminishes the ability to communicate. We aimed to develop and evaluate a psychosocial intervention program that focuses on communication in dementia care. This was intended to enhance the quality of life (QoL) of people with dementia and to reduce the burden on their informal caregivers.

Method: A training program for informal caregivers of people with dementia was developed. The training combines the expertise of geriatric psychiatry, geriatric care, and educational psychology. Caregivers acquire and deepen competencies required to improve communication in dementia care. The training was evaluated with a pre–post-control group design and time-series analyses. Twenty-four informal caregivers participated in the study.

Results: The results of the study provide evidence that TANDEM training increases caregivers’ use of strategies that are relevant for communication in dementia care and the care receivers’ QoL.

Conclusion: The results of research in this program show the relevance of including caregivers in interventions and the importance of communication for the QoL of people with dementia.     

Divergences of perspective between people with aphasia and their family caregivers

Background: Studies of the relation between family caregivers and care-receivers have identified large divergences between their perspectives. It has been suggested that these divergences may adversely affect the care relationship. However, there has been little research examining the source of these divergences.

Aims: The reported mixed-method study aimed to examine the relationship between people with aphasia and their family caregivers in order to identify the sources of observed divergences of perspective.

Methods & Procedures: A total of 20 people with aphasia and their main family caregivers, living in the UK, completed an adapted version of the Interpersonal Perception Method questionnaire, which yielded both rating data and qualitative data. Participants rated themselves, each other, and how they thought the other would rate them, on issues regarding communication ability and identity.

Outcomes & Results: As expected on the basis of existing research, divergences clustered around the provision of communication support and issues of confidence, independence, embarrassment, and overprotection. A qualitative analysis of the participants' talk during the rating task suggested that a source of these discrepancies is in the conflicting demands which characterise the care relationship, specifically, caregivers' desire to support independence on the one hand but feeling compelled to be protective on the other hand. In response to these demands, caregivers try to create the impression that the disability has less impact than it has, and that they are more in control than they feel they are.

Conclusions: We conclude by suggesting that some divergences of perspective may not be adverse overall, but rather may be a result of caregivers' creative adaptations to seemingly irreconcilable demands.     

Social participation following right hemisphere stroke: influence of a cognitive-communication disorder

Background: The ability to return to social activities and roles is an important focus of rehabilitation for people affected by stroke. Rehabilitation professionals currently have limited evidence on the impact of a cognitive-communication disorder (CCD) following right hemispheric (RH) stroke on social participation, and how to support return to social activities and roles.

Aims: This study describes (1) social participation change as reported by people with RH stroke; (2) compares social participation change across two groups based on the presence or absence of CCD following RH stroke; and (3) compares self and proxy reports of changes in participation.

Methods & Procedures: A telephone survey was conducted with randomly selected people with first onset, unilateral RH stroke, and with matched significant others (proxies). The Sydney Psychosocial Reintegration Scale (SPRS-2) was utilised to explore change associated with stroke across Occupational Activities (OA), Interpersonal Relationships (IR) and Independent Living Skills (LS). Survey responses were compared utilising independent t-tests across two groups based on the presence or absence of CCD. Participant-proxy agreement was established using inter-rater correlation coefficient.

Outcomes & Results: Change in social participation was reported for thirty-six participants with an average age of 65.95 years (SD = 13.09), of whom 58.3% were male and 38.9% employed at the time of the stroke. Time post-stroke to completion of the SPRS-2 ranged from six to 33 months. Most participants (94.4%, n = 34) reported change in at least one of the SPRS-2 domains. The presence of CCD had an impact on social participation as measured on the SPRS-2, which was significantly different to what was reported by participants without a communication impairment post-RH stroke (p = 0.02.) Inter-rater agreement statistic (Kappa) indicated a fair participant-proxy dyad agreement in the group with CCD, and a moderate agreement in the group without CCD across the SPRS-2 domains.

Conclusions: Changes in social participation following RH stroke occur across Occupational Activities, Interpersonal Relationships and Independent Living Skills for the majority of people and occur with greater frequency and degree where a CCD is present. This exploratory study highlights the importance of rehabilitation goals that address social participation to reduce potential social isolation in people with CCD post-RH stroke. Further identification of risk factors for social participation restriction in this population is required to better inform rehabilitation timing and focus.