Touch,the essence of caring for people with end-stage dementia: A mental health perspective in Namaste Care

This article presents the mental health aspects of ‘touch’ associated with a funded research project: Avoiding ‘high tech’ through ‘high touch’ in end-stage dementia: Protocol for care at the end-of-life. These mental health aspects highlight the human need for touch that continues up until and inclusive of the final stages of life. This study was informed by Simard's (2007) ‘high touch’ protocol based on the End-of-Life Namaste Care programme for people with dementia. The article is situated in relation to the research project which used a three-phase mixed methods approach. Data explored in this article are derived from focus groups conducted at three residential aged care facilities located in metropolitan and regional areas of NSW, Australia. The exploration of touch vis-a-vis mental health fell under two broad themes: touch by others and touch by the person. Sub-elements of these themes comprised touch towards a physical objective, touch towards an emotional objective, touch of objects and touch of others. The overarching outcome of interconnectedness embraced environmental awareness and human and life awareness. These two broad themes, with their accompanying elements, express the essential nature of mental health as a reciprocal connectedness, with reciprocal impacts on both those people with advanced dementia and their carers.     

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.     

Support in the community for people with dementia and their carers: a comparative outcome study of specialist mental health service interventions

BACKGROUND: This study aimed to evaluate outcomes for carers receiving the Admiral Nurse Service, a specialist mental health nursing service for carers of people with dementia. In contrast to many community mental health teams, it works primarily with the caregiver, focuses exclusively on dementia and offers continuing involvement, throughout the caregiving career, including emotional support, provision of information and coordination of practical support. METHOD: 104 carers of people with dementia who were interviewed as soon as possible after being referred to a number of Admiral Nurse (AN) services or conventional services in neighbouring areas, and who were re-interviewed eight months later, form the sample (43 AN; 61 comparison). RESULTS: There were no significant differences between groups, controlling for initial score, on the primary outcome measure at follow-up, the 28-item General Health Questionnaire (GHQ) or its sub-scales, apart from anxiety and insomnia, where outcome was better for the AN group (p = 0.038). Follow-up GHQ scores were associated with ratings of past and current relationship quality. There were no differences in survival in the community between the groups. CONCLUSION: Both conventional and AN services are associated with lower distress scores over an eight-month period. Outcome for people with dementia (in terms of institutional placement) is no worse in the AN group, despite the carer focus. Some support is provided for a model of dementia-specialist service which engages with the caregiver and continues involvement for as long as is required, rather than simply carrying out an assessment and referring the person back to social services or primary care.     

The effect of coping on the caregiver of elderly patients with dementia

Abstract Ninety-eight caregivers of elderly patients with cognitive impairment were surveyed by questionnaires in order to examine the relationship between their coping strategies and subjective burden. Confrontative coping and avoidance coping were significantly associated with their burden. The severity of cognitive impairment and the behavioral problems of the patients were also significantly associated with the caregivers' burden. However, a multiple regression analysis suggested that the caregivers' coping strategies may be more important than the patients' condition in terms of the effects on the burden.     

Coping with caring for someone with dementia: reviewing the literature about men

As the demographics of the population change, men are assuming increasingly important roles as caregivers, despite caregiving often being perceived as a feminine activity. Research to date has described sex differences in caregiving and psychological outcomes. However, there appears to be little understanding of varying ways men may cope with the strains of caregiving. To this end, a systematic literature search was carried out to determine what is known about men coping with caring for someone with dementia. The search process elicited 93 articles, reviewed and categorised by their content. The majority of articles reported research and interventions with little detailed analysis of gender as a mediating variable for coping. Four articles reported finding no sex-differences in coping and burden. Of the nine articles that reported exclusively on men caregivers, only one generated quantitative data within an explicit framework of stress, appraisal and coping. Conclusions suggest that future research requires refinement and sophistication to address the role of gender in mediating appraisals of strain and coping responses to familial dementia care. The limitations of gender difference research and self-report methodologies are discussed along with their implications for interventions and suggestions for future research.     

Care management, dementia care and specialist mental health services: an evaluation

OBJECTIVE: To evaluate a model of intensive case management for people with dementia based in a community-based mental health service for older people. METHOD: Quasi-experimental design. Individuals in one community team setting received case management and were compared with those in a similar team without such a service. Forty-three matched pairs were identified. Eligible older people and their carers were interviewed at uptake and again at 6 and 12 months. RESULTS: The impact of the scheme upon placement occurred in the second year at the end of which 51% of the experimental group remained at home compared with 33% of the comparison group. For the experimental group significant improvements in the social contacts of older people were noted; a decrease in the stress of their carers was observed, together with a reduction in their input to the care of the client; and there were significant improvements on ratings of overall need reduction, aspects of daily living and level of risk. Differences between the two groups based on service receipt showed higher costs for the experimental group. DISCUSSION: The benefits to older people and their carers confirms previous findings that the most effective case management interventions are those targeted on a highly specific client group. Issues which influence the cost-effectiveness of intensive case management are discussed. The benefits of locating this service within a specialist mental health team are explored in the context of current initiatives to promote greater service integration between health and social services.     

Different dimensions of social support for the caregivers of patients with schizophrenia: main effect and stress-buffering models

The aims of this study were: (i) to assess the impact of caring for patients with schizophrenia on the mental health status of the caregivers; and (ii) to examine the direct and buffer effects of social support on the mental health status of these caregivers. A total of 61 key caregivers of patients with schizophrenia were administered the Chinese Health Questionnaire (CHQ) and the Measure of Support Function (MSF) self-report questionnaire to assess their mental health and social support status. The MSF questionnaire constitutes four subscales, including: (i) the perceived crisis support (PCS); (ii) the perceived routine support (PRS); (iii) the received crisis support (RCS); and (iv) the received routine support (RRS) subscale. The Positive and Negative Syndrome Scale (PANSS) was used to assess the psychopathology severity of the patients they cared for. Then the authors used the hierarchical multiple regression model to analyze the relationship between these variables. The psychopathology severity of the patients reflected by the PANSS scores correlated inversely with the caregivers' CHQ scores. Besides, the PCS subscale scores correlated positively with the caregivers' CHQ scores. Moreover, the interaction between the RCS subscale scores and the PANSS scores was significant. Significant positive correlation between the RCS and CHQ exists only in the higher PANSS subgroup, but not in the lower PANSS subgroup. The psychopathological severity of the patients has a negative impact on their caregivers' mental health. PCS has a direct effect, and RCS has a buffer effect on the mental health status of these caregivers.     

Men caring for wives or partners with dementia: Masculinity,strain and gain

Over the last three decades, demographic changes in the developed world have meant more older men find themselves in caregiving roles. Little research has been undertaken with male caregivers in dementia care. Although there is general consensus that men construe care differently to women, gender has seldom been treated as an independent variable that can inform supportive interventions. This study, underpinned by an assumption of the benefits of men's differential response to managing illness, sought to explore how facets of masculinity might relate to male caregivers’ appraisals of strain and gain in dementia care. Seventy men, currently caring for a partner with dementia, completed questionnaires exploring their gender identity (Personal Attributes Questionnaire), gender role conflict (Gender Role Conflict Scale), and appraisals of carer strain and gain (Brief Zarit Burden Interview and Caregiving Satisfaction Scale). They were also asked to provide demographic information and, since caregiver strain is significantly affected by a care-receiver's cognitive and behavioural difficulties, to complete the revised Memory and Behaviour Problems Checklist. Carers’ age and duration of caregiving was broadly representative of previous studies. A series of regression analyses revealed contrasting findings to previous studies. Gender identity did not appear important in carer's evaluations of strain or gain, and only the ‘restrictive affectionate behaviour between men’ subscale of gender role conflict had explanatory power in analyses with all strain and gain variables. Findings are discussed with regard to response bias and defended masculinity. Consideration is made about how men can successfully access services.     

A population-based health survey of maladaptive behaviours associated with dementia in elderly people with learning disabilities

Maladaptive behaviours are known to present as a feature of dementia amongst people from the general population, but there has been little research to examine whether this has implications for people with learning disabilities who develop dementia. Out of 143 people with learning disabilities aged 65 years and over living in Leicestershire, England, 134 (93.7%) participated in the study. Twenty-nine people diagnosed as having dementia were compared against 99 people without dementia; six people with possible dementia were excluded from the analysis. Comparisons were made on the results of a checklist of maladaptive behaviours. Seventeen out of the 22 maladaptive behaviours examined were found to be more prevalent amongst the people with dementia. The behaviours which were significantly more prevalent in the group with dementia included lack of energy, lack of sense of danger, sleep disturbance, agitation, incontinence, excessively uncooperative, mealtime/ feeding problem, irritability and aggression. Dementia is becoming more prevalent amongst people with learning disabilities because of their increasing life span. Maladaptive behaviours are commonly associated with dementia. This can cause a significant burden for individuals and their carers, which may influence the viability of a person's residential placement.     

A systematic review of intervention studies about anxiety in caregivers of people with dementia

BACKGROUND: There is considerable literature on managing depression, burden and psychological morbidity in caregivers of people with dementia (CG). Anxiety has been a relatively neglected outcome measure but may require specific interventions. OBJECTIVE: To synthesise evidence regarding interventions that reduce anxiety in CGs. METHODS: Twenty-four studies met our inclusion criteria. We rated the methodology of studies, and awarded grades of recommendation (GR) for each type of intervention according to Centre for Evidence Based Medicine guidelines, from A (highest level of evidence) to D. RESULTS: Anxiety level was the primary outcome measure in only one study and no studies were predicated on a power calculation for anxiety level. There was little evidence of efficacy for any intervention. The only RCT to report significantly reduced anxiety involved a CBT and relaxation-based intervention specifically devised to treat anxiety, and there was preliminary evidence (no randomised controlled trials) that caregiver groups involving yoga and relaxation without CBT were effective. There was grade B evidence that behavioural management, exercise therapies and respite were ineffective. LIMITATIONS: Many interventions were heterogeneous, so there is some overlap between groups. Lack of evidence of efficacy is not evidence of lack of efficacy. CONCLUSIONS: CBT and other therapies developed primarily to target depression did not effectively treat anxiety. Good RCTs are needed to specifically target anxiety which might include relaxation techniques. Some of the interventions focussed on reducing contact with the care recipients but caregivers may want to cope with caring and preliminary evidence suggests strategies to help CGs manage caring demands may be more effective.     

Major depression as a risk factor for early institutionalization of dementia patients living in the community

OBJECTIVE: Although depression is known to be frequently associated with dementia, it is nonetheless under-diagnosed and under-treated among this patient population. Its effect on outcome for dementia patients is thought to be substantial, because depression appears to induce higher than normal rates of disability as well as supplementary cognitive decline. The aim of this study was to measure the impact of major depression on the institutionalization rate of community-dwelling dementia patients. DESIGN: Prospective cohort study. SETTING: Paris, France. PARTICIPANTS: Three-hundred forty-eight consecutive dementia outpatients of a geriatric clinic (mean age: 81 years, 69.8% women, 65.5% dementia of Alzheimer's type, mean baseline MMSE score: 20.5), followed between 1997 and 2002 (mean follow-up: 20.5 months). RESULTS: Twenty-five percent of the patients met the criteria of major depression at baseline, and only 30.3% of these received antidepressant medication. Major depression at baseline was independently associated with nursing home admission within one year of the baseline assessment. Antidepressant medication tended to protect against this outcome, but not to a statistically significant extent. CONCLUSIONS: Major depression at baseline is an independent risk factor for early institutionalization of dementia sufferers. Early institutionalization is defined in this study as nursing home placement within a year of diagnosis with dementia at our specialized outpatient center. The study highlights the need for better management of depression among dementia outpatients. Further investigation is needed to evaluate the protective effect of antidepressant medication (and/or non-pharmacological therapies) on the institutionalization rate.