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A telehealth behavioral coaching intervention for neurocognitive disorder family carers
- Authors:
- STEFFEN Ann M., GRANT Judith R.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 31(2), 2016, pp.195-203.
- Publisher:
- Wiley
Objectives: This study examined the differential impact of two telehealth programmes for women caring for an older adult with a neurocognitive disorder. Outcomes examined were depressive symptoms, upset following disruptive behaviours, anxious and angry mood states, and caregiving self-efficacy. Methods: Women cohabitating with a family member diagnosed with a neurocognitive disorder were assigned via random allocation to either of the following: (1) a 14-week behavioural intervention using video instructional materials, workbook and telephone coaching in behavioural management, pleasant events scheduling, and relaxation or (2) a basic education guide and telephone support comparison condition. Telephone assessments were conducted by interviewers blind to treatment condition at pre-intervention, post-intervention, and 6 months following intervention. Results: For those providing in-home care at post-treatment, depressive symptoms, upset following disruptive behaviours, and negative mood states were statistically lower in the behavioural coaching condition than in the basic education and support condition. Reliable change index analyses for Beck Depression Inventory II scores favoured the behavioural coaching condition. Caregiving self-efficacy scores for obtaining respite and for managing patient behavioural disturbances were significantly higher in the coaching condition. Effect sizes were moderate but not maintained at the 6-month follow-up. Conclusions: This study provides some initial evidence for the efficacy of a telehealth behavioural coaching intervention compared with basic education and telephone support. Carers' abilities to maintain strategy use during progressive disorders such as Alzheimer's disease likely require longer intervention contact than provided in the current study. Dementia carers, including those living in rural areas, can benefit from accessible and empirically supported interventions that can be easily disseminated across distances at modest cost (Edited publisher abstract)
Subjective stressors moderate effectiveness of a multi-component, multi-site intervention on caregiver depression and burden
- Authors:
- HATCH Daniel J., DeHART William B., NORTON Maria C.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 29(4), 2014, pp.406-413.
- Publisher:
- Wiley
The present study assessed whether caregiving contextual factors moderated outcomes of a caregiver intervention. Extant data from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) II study, a randomized-control trial of a multi-component, multi-site intervention for dementia caregivers was utilized. 498 caregivers, and their care recipients were randomly assigned to intervention or control group. Multiple regression was used to regress Center for Epidemiological Studies of Depression Scale (CES-D) and Zarit burden scores on the interaction between group membership and various factors reflecting the caregiving context. Lower follow-up CES-D scores in the intervention group were found only for those: in the fourth quartile of baseline CES-D; with high Revised Memory and Behavior Problems Checklist (RMBPC) stress and with a home health aide. Diminished burden was found in the intervention group only for the following: those in the fourth quartile of baseline burden, and in the fourth quartile of Mini Mental State Examination, and with high RMBPC stress, with a trend for diminished burden among those with a paid homemaker. Results suggest greater intervention efficacy among caregivers experiencing subjective stress. (Edited publisher abstract)
Which behavioral and psychological symptoms of dementia are the most problematic? Variability by prevalence, intensity, distress ratings, and associations with caregiver depressive symptoms
- Authors:
- FAUTH E. B., GIBBONS A.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 29(3), 2014, pp.263-271.
- Publisher:
- Wiley
Background: Behavioural and psychological symptoms of dementia (BPSD) impact well-being for persons with dementia (PWD) and caregivers. Identifying the most problematic symptoms is vital in targeting interventions and allocating resources. The current study highlights inconsistencies in the “most problematic” symptoms when identified via prevalence, intensity, caregiver distress, or associations with caregiver depressive symptoms. Methods: Caregivers (N = 177) were mostly female (77%) and spouses of PWD (73%), with average age of 66.7 years (SD = 16.1). They reported BPSD frequency and distress via the Revised Memory and Behavior Problem Checklist (RMBPC) and Neuropsychiatric Inventory (NPI), and their own depressive symptoms via the Geriatric Depression Scale (GDS). BPSD were ranked by prevalence, average frequency, and average distress ratings. RMBPC subscales were correlated with GDS, and discriminant function analyses used NPI symptoms to discriminate between caregivers' normal (range 0–9) or elevated (10+) GDS. Results: Most prevalent NPI symptoms were Apathy, Depression, and Agitation. Most intense (frequency × severity) were Appetite, Motor behaviors, and Apathy, and most distressing were Delusions, Agitation, and Irritability. For RMBPC, Memory was most frequent but least distressing, whereas Disruptive was least frequent but most distressing. RMBPC frequency and distress subscales were significantly associated with caregiver GDS. Discriminant function analyses were statistically significant. Conclusions: Symptoms revealed as “most problematic” varied by measurement criterion. Common or frequent symptoms are not necessarily the most distressing or most predictive of caregiver depression. (Publisher abstract)
Stress and burden among caregivers of patients with Lewy Body Dementia
- Authors:
- LEGGETT Amanda N., et al
- Journal article citation:
- Gerontologist, 51(1), February 2011, pp.76-85.
- Publisher:
- Oxford University Press
Lewy Body Dementia (LBD) is the second most prevalent dementia type in the USA. The authors describe its symptoms, list its distinguishing features and advise on its possible misdiagnosis as Alzheimers disease. This study looks at stress, and the burden and appraisal of emotional, physical and social challenges faced by 611 family carers. Participants were recruited via a Lewy Body Dementia Association survey online between December 2007 and January 2008. A modified 12-item Zarit Burden Interview and factor analysis revealed 3 types of burden: role strain; personal strain; and worry about performance. Multiple regressions identified the following as predictors of these burdens: behavioural and emotional problems (BEPs); deficiencies in the activities of daily living (ADL); isolation; carer age; and patient gender. Other hallmark stressors commonly associated with LBD include: motor and movement disabilities, which add to difficulties with ADL; and a lack of formal awareness of the condition, which can lead to feelings of isolation and BEPs. The authors note that the following were not linked to burden: formal service use; falls; difficulties in finding a physician; and subsequent evaluation of that physician.
Dementia carer education and patient behaviour disturbance
- Authors:
- COEN Robert F., et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 14(4), April 1999, pp.302-306.
- Publisher:
- Wiley
This study evaluates the impact of a Dementia Carers Education Programme on carer quality of life, burden and well being. The study found the programme increased carers' knowledge about dementia, but had no significant impact on quality of life burden, or well-being. Increased patient behaviour disturbance appeared to be a major factor when the carer's situation worsened over time. Despite high carer satisfaction the efficacy of a group-based education approach to the management of behaviour disturbance in dementia appears limited. Concludes that more intensive or individually tailored interventions may be necessary alternatives.
Clinical diagnoses and disability of cognitively impaired older persons as predictors of stress in their carers
- Authors:
- CULLEN John S., GRAYSON David A., JORM Anthony F.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 12(10), October 1997, pp.1019-1028.
- Publisher:
- Wiley
Aspects of the caring relationship are often promoted as more important than the clinical features of the care recipient in predicting caregiver wellbeing. This article reports on a study investigating the clinical profiles of cognitively impaired care recipients as predictors of the psychological morbidity of their carers. It also examines whether features of the care recipient, caregiver or their relationship are additional predictors of caregiver wellbeing. Results found that the subjects' clinical characteristics, in particular disability and disturbed behaviour, were strong predictors of caregiver wellbeing. Sociodemographic, caregiver and relationship characteristics were found to be less influential.
Practitioners' understanding of barriers to accessing specialist support by family carers of people with dementia in distress
- Authors:
- MANTHORPE Jill, et al
- Journal article citation:
- International Journal of Care and Caring, 2(1), 2018, pp.109-123.
- Publisher:
- Policy Press
Distressing symptoms in dementia are hard to manage for many family carers. This article explores practitioners' perceptions of the barriers to accessing skilled behaviour management support encountered by carers. A survey of cases referred to the English National Health Service (n = 5,360) was followed by in-depth group discussions and practitioner interviews. Data revealed that practitioners focused on care home residents or older people with mental health problems other than dementia, rather than community-dwelling people with dementia and families. Barriers to access included misperceptions about the nature of distressing behaviour affecting carers and structural limitations in the capacity of specialist services to respond to carers. (Publisher abstract)
The effect of exercise on behavioural and psychological symptoms of dementia: the EVIDEM-E randomised controlled clinical trial
- Authors:
- LOWERY David, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 29(8), 2014, pp.819-827.
- Publisher:
- Wiley
Objective: This study evaluates the effectiveness of a simple dyadic (person with dementia and their main carer) exercise regimen as a therapy for the behavioural and psychological symptoms of dementia. Method: A two arm, pragmatic, randomised, controlled, single-blind, parallel-group trial of a dyadic exercise regimen (individually tailored walking regimen designed to become progressively intensive and last between 20–30 minutes, at least five times per week). Community-dwelling individuals with ICD-10 confirmed dementia with the following: clinically significant behavioural and psychological symptoms, a carer willing and able to co-participate in the exercise regimen, and no physical conditions or symptoms that would preclude exercise participation were invited by mental health or primary care services into the study. Results: One hundred and thirty-one dyads were recruited to this study. There was no significant difference in Behavioural and Psychological Symptoms as measured by the Neuropsychiatric Inventory at week 12 between the group receiving the dyadic exercise regimen and those that did not. There was a significant between-group difference in caregiver's burden as measured by the Zarit Caregiver Burden Inventory at week 12 favouring the exercise group. Conclusions: This study found that regular simple exercise does not appear to improve the behavioural and psychological symptoms of dementia, but did seem to attenuate caregiver burden. Further study to improve exercise uptake are needed. (Edited publisher abstract)
Exercise programs for people with dementia: review
- Authors:
- FORBES D., et al
- Publisher:
- John Wiley and Sons; Cochrane Collaboration
- Publication year:
- 2013
- Pagination:
- 73
- Place of publication:
- Chichester
In an update of a previous 2008 review, this systematic review review evaluated the results of 16 trials (search date August 2012), including 937 participants, that tested whether exercise programs could improve cognition, activities of daily living, challenging behaviour, depression, and mortality in older people with dementia or benefit their family caregivers. The review found promising evidence that exercise programs can significantly improve the cognitive functioning of people with dementia and their ability to perform daily activities, but there was a lot of variation between trial results that we were not able to explain. The studies showed no significant effect of exercise on mood, with little or no evidence regarding behaviour, mortality in older people with dementia, benefit to family caregivers, or use of health care services. The review calls for further well-designed research to examine these outcomes and to determine the best type of exercise program for people with different types and severity of dementia. (Edited publisher abstract)
Identifying needs, burden, and distress of carers of people with Frontotemporal dementia compared to Alzheimer’s disease
- Authors:
- NICOLAOU Paula L., et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 9(2), May 2010, pp.215-235.
- Publisher:
- Sage
In this paper, the authors highlight how research on carers of people with Frontotemporal dementia (FTD) is negligible compared to the literature on carers of people with Alzheimer’s disease (AD), with little research comparing the two groups. Previous studies have focused on identifying the behavioural characteristics of people with FTD or AD, leaving the impact of these behaviours on the psychological well-being of carers of people with FTD relatively unexplored. This study investigated the needs, burden, and extent of depression and anxiety in 30 carers of people with FTD, compared to 30 carers of people with AD. Results showed that the needs of carers of people with FTD were considerably higher than those of the carers of people with AD. The greater needs were related to the younger onset of FTD, financial dissatisfaction, typical FTD characteristics, and access to appropriate services, information and support. Results also suggested that female carers were more likely to report a greater severity and impact of disruptive symptoms associated with FTD. No significant differences were found between the two groups on carers’ levels of burden, depression or anxiety. In summary, the authors suggest specific educational and support programmes, raising community awareness and understanding, and tailoring existing domiciliary services and activities for people with FTD.