Carer Depression Research Articles

Predictors of the psychosocial impact of being a carer of people living with Parkinson's disease: a systematic review.

Caring for a person with Parkinson's disease (PwP) can have a variety of negative consequences that may challenge their ability to continue their caring role. It is still unknown why some individuals adapt better than others in response to such burdens. This review is the first to synthesize and evaluate the evidence on the predictive factors of psychosocial outcomes in PwP carers. Studies which identified predictors of psychosocial outcomes for unpaid carers were included. PsychINFO, EMBASE, AMED, BNI and CINAHL databases were searched, supplemented by scanning of references lists of included studies and relevant journals from 2008 onwards. Quality was assessed using the NICE methodology checklist for prognostic studies. Twenty-nine studies were included in the review, providing a low-level of evidence. Carer burden was investigated in 18 studies and mental health and quality of life (QoL) in seven studies each. PwP non-motor symptoms and QoL and carer depression were consistently identified as predictors for at least one psychosocial outcome. Demographics and disease factors were consistently found not to be predictors. Carer involvement and protective factors (e.g. social support, personality) demonstrated promising findings but studies were too few or factors measured inconsistently. Confident conclusions could not be drawn regarding the most important predictors that should be targeted in psychosocial interventions due to methodological weaknesses and lack of theoretical testing across the current literature. Future research should build upon psychological theory to gain a better understanding of the mechanisms that explain how carers adapt to caregiving.

Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease

BackgroundDignity therapy is a brief psychotherapy that has been shown to enhance the end of life experience. Dignity therapy often involves family carers to support patients weakened by illness and family carers are also the usual recipients of the legacy documents created. No research to date has examined the impact of dignity therapy on family carers at the time of the intervention. This study examined the effects of dignity therapy on family carers of people with motor neurone disease (MND).MethodsThis is a cross-sectional study utilizing a one-group pre-test post-test design with 18 family carers of people diagnosed with MND. Outcomes measured caregiver burden, anxiety, depression, and hopefulness. Acceptability was measured with a questionnaire. Feasibility was assessed by examining family carers’ involvement in the therapy sessions, time taken to conduct sessions, and any special accommodations or deviations from the dignity therapy protocol.ResultsThere were no significant pre-test post-test changes on the group level, but there were decreases in anxiety and depression on the individual level. Baseline measures indicate that 50% of family carers had moderate to severe scores for anxiety prior to dignity therapy. MND family carers saw benefits to the person with MND and to themselves after bereavement, but acceptability of dignity therapy at the time of the intervention was mixed with some family carers indicating it was helpful, some indicating it was harmful, and many expressing ambivalence. Dignity therapy involving MND family carers is feasible and the involvement of family carers has minimal impact on the therapy.ConclusionDignity therapy is not likely to alleviate caregiver burden in MND family carers, but it may have the ability to decrease or moderate anxiety and depression in distressed MND family carers. Dignity therapy is feasible and generally acceptable to MND family carers. Dignity therapists may provide a better experience for family carers when they are aware of acceptance levels and the quality of partner relationships.Trial registrationANZCTR Trial Number: ACTRN12611000410954

Return to driving in the first 6 months of community integration after acquired brain injury

Return to driving is a goal and milestone in the recovery process following acquired brain injury (ABI). Knowledge of whether and when a person is likely to return to driving is important to people with ABI, family members and clinicians. To determine the rates, timing, correlates, and predictors of return to driving in the first 6 months after discharge from hospital following ABI. Survey of 212 participants with ABI and 121 family members at discharge and 3 and 6 months later. Participants with ABI were grouped according to driving status (not driving, returned within 3 months, returned within 6 months). Groups were compared on demographics, injury severity, quality of life, functioning, psychosocial integration, depression, and carer well-being. By 6 months post-discharge 62.3% had resumed driving. Between group differences existed on measures of injury severity, and psychosocial integration at 6 months, and carer depression and strain at discharge and 6 months. Whether and when someone returned to driving could be predicted by length of hospital stay, and level of community integration, and pain at discharge. Educating clients about their likelihood and timing of return to driving, and supporting non-drivers and their carers may improve psychosocial outcomes.

Efficacy and cost-effectiveness of an outcall program to reduce carer burden and depression among carers of cancer patients [PROTECT]: rationale and design of a randomized controlled trial

BackgroundCarers provide extended and often unrecognized support to people with cancer. The aim of this study is to test the hypothesis that excessive carer burden is modifiable through a telephone outcall intervention that includes supportive care, information and referral to appropriate psycho-social services. Secondary aims include estimation of changes in psychological health and quality of life. The study will determine whether the intervention reduces unmet needs among patient dyads. A formal economic program will also be conducted.Methods/DesignThis study is a single-blind, multi-centre, randomized controlled trial to determine the efficacy and cost-efficacy of a telephone outcall program among carers of newly diagnosed cancer patients. A total of 230 carer/patient dyads will be recruited into the study; following written consent, carers will be randomly allocated to either the outcall intervention program (n = 115) or to a minimal outcall / attention control service (n = 115). Carer assessments will occur at baseline, at one and six months post-intervention. The primary outcome is change in carer burden; the secondary outcomes are change in carer depression, quality of life, health literacy and unmet needs. The trial patients will be assessed at baseline and one month post-intervention to determine depression levels and unmet needs. The economic analysis will include perspectives of both the health care sector and broader society and comprise a cost-consequences analysis where all outcomes will be compared to costs.DiscussionThis study will contribute to our understanding on the potential impact of a telephone outcall program on carer burden and provide new evidence on an approach for improving the wellbeing of carers.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN: 12613000731796.

Relationship of coping style to mood and anxiety disorders in dementia carers

Mood and anxiety disorders are common in family carers of people with dementia, and are associated with poor carer and care recipient outcomes. Caring for someone with dementia is stressful, but how carers cope may be an important determinant of carer psychological morbidity. This review summarizes and integrates the literature on the effect of coping style and its role in effective carer interventions. Two systematic reviews evaluated relationships between coping style and mood/anxiety disorders in observational studies and randomized controlled trials (RCTs), respectively. Several subsequent cross-sectional studies have also investigated these relationships, including in the context of coping as a mediator or moderator. Studies also investigated suicidality and cultural factors underlying coping. More dysfunctional, and less emotional support and acceptance-based coping styles are robustly associated with carer depression and anxiety symptoms and caseness in cross-sectional studies. There is also preliminary evidence from longitudinal studies that these coping styles may predict subsequent carer psychological morbidity. Psychological interventions successful in reducing depression counterintuitively increased dysfunctional coping in RCTs, but no RCTs have directly tested whether emotional support and acceptance-based coping mediates the effects of psychological intervention.

The Impact on the Family Carer of Motor Neurone Disease and Intervention with Noninvasive Ventilation

The diagnosis of motor neurone disease (MND) has a profound effect on the functioning and well-being of both the patient and their family, with studies describing an increase in carer burden and depression as the disease progresses. This study aimed to assess whether patient use of noninvasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden. The study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life. Sixteen family carers were followed up over a period ranging from one month to two years. NIV was perceived as having little impact on carer burden. The data however highlighted a range of sources of other burdens relating to the physical strain of caring. The Medical Outcomes Study Short Form (SF-36 Health Survey) Physical Component Summary (PCS) scores were considerably below that of the Mental Component Summary (MCS) score at baseline and at all following time points. Carers described the physical effort associated with patient care and role change; the challenge inherent in having time away; and problems relating to the timing of equipment and service delivery. NIV can be recommended to patients without concerns regarding increasing carer burden. The predominant source of burden described related to the physical impact of caring for a patient with MND. Services face challenges if this physical burden is to be reduced by providing equipment at an optimal time and successfully coordinating their input.

Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial

Objective To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Design Randomised, parallel group,...

Delivering the Incredible Years parent programme to foster carers in Wales: reflections from group leader supervision

Growing numbers of children in the UK enter the care system with significant emotional and behavioural problems. The recent increase in numbers of children and the reduction in residential children’s homes have contributed to a growth in foster carer provision. As a result, carers are looking after more vulnerable children. Challenging child behaviours and carers’ lack of skill in dealing with them are the two most common reasons for placement breakdown and foster carers need comprehensive support and additional training to avoid this happening. This article describes carer-specific issues discussed during group leader supervision during a small platform trial of the Incredible Years (IY) parent programme delivered to foster carers in three local authorities in Wales (Bywater et al, 2010). The positive trial results, which are summarised, included reductions in children’s challenging behaviour and carer depression. Issues related to the specific challenges of looking after a fostered child, which were discussed by leaders in preparing for groups and raised by the carers attending, were explored and are presented here. The beneficial effects of the programme on child behaviour and carer mental health, coupled with carer and leader feedback, confirmed the relevance and effectiveness of the IY parent programme for dedicated foster carer groups.

Sense of coherence, burden, and affective symptoms in family carers of people with dementia

Caring for a relative with dementia has been associated with high levels of psychological morbidity in carers. Sense of coherence is an important resource of successful coping with caregiving. The purpose of the present study was to examine the relationship between stress associated with caregiving, sense of coherence, and self-reported depression and anxiety in family carers of people with dementia. We hypothesized that carers reporting high levels of anxiety and depression will report low levels of coherence, and that the relationship between caregiver stress and affective symptoms will be mediated by sense of coherence. A total of 170 carers of people with dementia took part in the present study. Family carers completed the Sense of Coherence Scale, the Relative Stress Scale, and the Hospital Anxiety and Depression Scale. A series of multiple linear regressions were conducted to examine the relationship between stress related to caregiving, caregiver anxiety and depression, and whether sense of coherence mediated this relationship. Self-reported anxiety and depression were associated with low levels of sense of coherence. Sense of coherence mediated the relationship between burden and self-reported depressive effect and anxiety symptoms. Carers reporting high levels of anxiety and depression are more likely to report low levels of sense of coherence. The relationship between stress related to caregiving and depressive symptoms is mediated by carers' self-reported sense of coherence. Future psychotherapeutic intervention studies in family carers of people with dementia may incorporate strategies that specifically target sense of coherence.

Cultural differences are reflected in variables associated with carer burden in FTD: a comparison study between India and Australia.

There is great need to understand variables behind carer burden, especially in FTD. Carer burden is a complex construct, and its factors are likely to vary depending on the type of dementia, carer characteristics and cultural background.OBJECTIVEThe present study aimed to compare profiles and severity of carer burden, depression, anxiety and stress in carers of FTD patients in India in comparison to Australia; to investigate which carer variables are associated with carer burden in each country.METHODSData of 138 participants (69 dyads of carers-patients) from India and Australia (India, n=31; Australia, n=38). Carer burden was assessed with the short Zarit Burden Inventory; carer depression, anxiety and stress were measured with the Depression, Anxiety and Stress-21. Dementia severity was determined with the Frontotemporal Dementia Rating Scale (FTD-FRS), and a range of demographic variables regarding the carer and patient were also obtained.RESULTSOverall, levels of carer burden were not significantly different across India and Australia, despite more hours delivering care and higher dementia severity in India. Variables associated with burden, however, differed between countries, with carer depression, anxiety and stress strongly associated with burden in India. By contrast, depression, stress, and dementia severity were associated with burden in Australia.CONCLUSIONThis study demonstrated that variables associated with carer burden in FTD differ between cultures. Consequently, cultural considerations should be taken into account when planning for interventions to reduce burden. This study suggests that addressing carers' skills and coping mechanisms are likely to result in more efficacious outcomes than targeting patient symptoms alone.

Grief reactions in dementia carers: a systematic review

Supporting dementia carers is an identified target of the UK government, yet we know little about such family carers' grief before and after the death of the person with dementia for whom they care. We systematically review the existing literature on characteristics, prevalence, predictors and associations of grief in dementia carers before and after death. We searched electronic databases and found 31 publications meeting predetermined criteria. Grief in dementia carers, which may be normal or complicated, is a complex reaction to losses occurring before and after death. Carers experience anticipatory grief as multiple losses for themselves (companionship, personal freedom and control) and the person with dementia. Anticipation and ambiguity about the future, anger, frustration and guilt are core features. Anticipatory grief is greatest in moderate to severe stage dementia and spouse carers, especially when the person with dementia is institutionalised. There was poor quality evidence about the prevalence of grief; studies reported anticipatory grief between 47% and 71%, and complicated grief after death is estimated around 20%. Carer depression increases with anticipatory grief. Being a spouse carer and being depressed are the strongest predictors of complicated and normal grief after death. Grief in dementia carers can be expected; however, those at risk of distressing anticipatory and complicated grief may be identified and targeted for intervention when necessary. Higher quality research from a wider range of samples and countries is needed to explore this complex and emergent topic.

Anxiety and depression in incident stroke survivors and their carers in rural Tanzania: A case-control follow-up study over five years

AimsTo quantify the extent and nature of anxiety and depression in a representative cohort of stroke survivors and their carers in rural Tanzania. DesignA cross-sectional design was used and stroke cases were followed up at 6–60 months post-stroke. Levels of anxiety and depression in stroke survivors, their carers (for physically dependent stroke survivors) and age- and sex-matched controls were assessed using the hospital anxiety and depression (HAD) scale. Other data collected included age, sex, time elapsed since stroke, quality of life, cognitive function, level of disability and socioeconomic status. ResultsLevels of depression seen in our cohort of stroke survivors (53.0%) are high compared to data from the developed and developing world. Anxiety levels (21.6%) are similar to published data. Stroke survivors (n=58, full data set n=51) and carers (n=27) were significantly more anxious than controls (n=58), whereas levels of depression were similar across all three groups. High stroke survivor HAD scores correlated with lower scores in physical health, psychological health and environment sections of the WHOQOL-Bref. Increased carer anxiety and depression were associated with reduced informant-reported levels of cognitive function in stroke survivors. ConclusionsTo our knowledge this is the first long term study of incident stroke cases in sub-Saharan Africa which has investigated the psychological health of stroke survivors and their carers. Our study highlights the growing need to develop community rehabilitation services in the developing world, which address both physical and psychological morbidity.

Ansiedad y depresión en cuidadores de pacientes dependientes

ObjectiveTo determine the prevalence of depression and anxiety in main carers of dependent patients as defined by the Dependent Care Law 39/2006. Material and methodsWe selected 294 main carers of dependent patients as defined by Law 39/2006, and performed a descriptive, cross-sectional and multi-centre study.They were recruited during the first semester of 2009 in 8 urban centres and 2 rural ones in the Communities of Andalusia and Murcia.We measured levels of anxiety and depression using the Hamilton scale, the social support by means of the Duke-UNK scale, sociodemographic, medical variables and associated with the support to the dependent person.The Chi-squared (χ), Wilcoxon and Student t tests were used to describe the data. Multivariate analysis was performed on the most significant data. ResultsA total of 254 carers showed anxiety (86%) (95% CI: 82.47-90.31%) and depression 191 (65%) (95% CI: 59.51 – 70.41%).The presence of anxiety was statistically significant (P=.043) when associated to: being an unpaid carer, low social support, previous diagnosis of anxiety and depression, taking of psychiatric drugs, and diagnosis of depression using the Hamilton depression scale.The depression presence of depression is associated with: being an unpaid carer, family relationship, previous diagnosis of anxiety and depression, taking of psychiatric drugs, and with an anxiety diagnosis according to the Hamilton scale.No statistically significant differences were detected in the association between levels of dependency and the appearance of depression and/or anxiety. ConclusionsThe prevalence of depression and anxiety in the carers of dependent patients is significantly greater than in the general population. The greater the social support the lower the prevalence of these disorders.

A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home.

BackgroundIncontinence in people with dementia is one of the factors associated with the decision to move to a care home. Managing incontinence adds to carer burden and has been reported by family carers as more difficult to manage than behavioural symptoms. Active management strategies have been reported to be associated with less carer depression. The purpose of this study was to investigate carers' perceptions of the range of incontinence problems they helped their relative with and the strategies they employed to manage these.MethodsFamily carers of people with dementia living in their own homes were recruited through primary care, specialist community mental health services and voluntary organisations. Qualitative semi structured interviews were conducted either face to face or by telephone and thematically analysed.ResultsThirty two carers were interviewed. They described a range of problems from supporting the person to remain independent in toileting, through to dealing with inappropriate behaviours, to containing and managing incontinence. All carers actively used problem solving strategies but sometimes these were not acceptable or understood by the person with dementia, particularly as the dementia progressed. Most carers reported protecting the person's dignity by not seeking health professionals help often until the point of a crisis. Once the carer has decided to seek help the responses from health professionals can be less than helpful, and carers report local health service policies on access to continence products to be inconsistent and often inappropriate to their circumstances. A few carers reported strategies for managing toileting and incontinence that have the potential for distress and harm to the person with dementia.ConclusionsPrimary care professionals could be more proactive in enquiry, repeated over time, about toileting and incontinence problems and in giving advice and information to reduce crisis and problems.

Poster 94 Coping Style Predicts Depression, Burden and Life Dissatisfaction in Carers of Patients with Subarachnoid Hemorrhage

Poster 94 Coping Style Predicts Depression, Burden and Life Dissatisfaction in Carers of Patients with Subarachnoid Hemorrhage

The role of pain treatment in managing the behavioural and psychological symptoms of dementia (BPSD)

ore than 90% of people with dementia experience at least one behavioural and psychological symptom of dementia (BPSD) over the course of the condition (Steinberg et al, 2008). BPSD include aggression and non-aggressive agitation, which occur in approxi-mately 20% of people with Alzheimer’s disease (AD) who are in contact with clinical services or living in the community, and 40–60% of people with dementia who are in care facilities (Margallo-Lana et al, 2001). Common manifestations of agi-tation include restlessness/pacing, verbal insults, shouting, and physical aggression, and most often occur during personal care. Delusions and halluci-nations are also present in 25% of people with dementia in clinical settings (Steinberg et al, 2008), and depression occurs in 20% of people with AD (Ballard et al, 2009a). The depression symptoms are similar to those seen in people without demen-tia, but are also often associated with an apparent deterioration in function and cognition. In most of these individuals BPSD have a clin-ically significant impact. They are often distress-ing for the patients who experience them, lead to stress and depression in carers, are associated with a reduced quality of life, and are often the trigger for institutional care (Ballard et al, 2009a; 2009b).

A description of multiple family workshops for carers of people with anorexia nervosa

Carers of people with eating disorders are uncertain about how best to help and express the need for information. Fifty per cent of carers (usually parents) exhibit clinically significant anxiety and/or depression. This may result from a difficulty coping with the manifestations of anorexia nervosa (AN) in the sufferer. In turn, eating disorder symptoms can be maintained by family reactions to the illness. Thus, carer's own symptoms, plus their uncertainty about how to help, impinge upon the AN sufferer, exacerbating their symptoms and behaviours. In this paper, we describe an intervention which uses cognitive behavioural therapy principles to alleviate carer's depression and anxiety and motivational interviewing to target behaviours that maintain eating disorder symptoms, for example high expressed emotion and poor communication. This is given in the form of an educational workshop for two families.

Have the Health Gaps Between Indigenous and Non-Indigenous Australian Children Changed over Time? Results from an Australian National Representative Longitudinal Study

The purpose of this study was to evaluate the changes of health gaps between Indigenous and non-Indigenous children over time and to explore critical factors that contribute to the changes. We employed data consisting of two cohorts of Australian children: infant (0/1 year) and children (4/5 years) that are part of the Longitudinal Study of Australian Children. Health outcomes were measured by physical outcome index (POI) and parent-rated health during 2004, 2006 and 2008. We used first-order autoregressive modelling to examine the longitudinal relationship between the changes in health outcomes and possible contributing risk factors. The results showed that the trends of POIs between Indigenous and non-Indigenous children were closing, while the gap of parent-rated health between the two populations persisted. We found that health outcomes (both POI and parent-rated health) at an earlier time point (t - 1) were significant predictors of the outcomes at the later time point (t). Carer's depression status, socio-economic position and neighbourhood liveability had significant and consistent impacts on parent-rated health, but had only varying impacts on POIs between Indigenous and non-Indigenous children as well as between the birth cohorts at different time periods. Similarly, low birth weight, carer's binge drinking behaviour and other risk factors showed such varying impacts at a particular time period. The study implied that appropriate interventions accompanied by monitoring of health outcomes are necessary in order to decrease the health gaps between Indigenous and non-Indigenous children.

Quality of life and depression in carers of patients with early onset dementia

Objective: To investigate the quality of life (QoL) and depression and its correlates in carers living with early onset dementia (EOD) patients. Method: The subjects were 49 carers, either married to or cohabiting with EOD patients, 38 with Alzheimer's disease and 11 with other types of dementia. The Quality of Life – Alzheimer Disease scale (QoL-AD) and Geriatric Depression Scale – 15 items (GDS-15) were used. Results: The mean QoL score for the carers was 37.9 (SD 5.5) and the mean GDS-15 score 5.1 (SD 2.9). Linear regression analyses with QoL and GDS-15 score as dependent variables were performed. Increased age of the carer (B = 0.32) and greater insight of the patients (B = −0.186) were significantly associated with a better QoL for the carer. Being married (B = 2.10), having children together with the patient (B = 1.61) and being the carer of a patient with cardiovascular disease (B = 2.28) were associated significantly with a higher GDS-15 score, whereas being the carer of a patient who received domiciliary nursing care (B = −2.29) was significantly associated with a lower GDS-15 score. Conclusion: The QoL for carers of EOD patients corresponds positively with the increased age of carers and with patients’ insight into their condition. Increased depressive symptomatology in carers was associated with being married, having offspring and caring for a patient with dementia and a co-morbid cardiovascular disease. A reduction in depression was seen in carers when the patients received domiciliary nursing care.

Falls in older people receiving in-home informal care across Victoria: Influence on care recipients and caregivers

Older people receiving informal care at home appear at high falls risk. This study investigates frequency, circumstances and factors associated with falls risk for older care recipients, and their informal caregivers. Ninety-six dyads, recruited from caregiver agencies, underwent a home assessment, including falls risk, function, depression, quality of life, self-rated health and carer burden. Care recipients were at high falls risk. In the past 12 months, 58% had fallen and 26% twice or more. Common falls risk factors were polypharmacy, multiple medical conditions and requiring functional assistance. Caregivers exhibited multiple health problems, moderate burden and reduced quality of life. Where care recipients had high falls risk, caregivers had significantly higher carer burden and depression. Low functional level and high care recipient health problems were independently associated with risk of falling (P < 0.05). Strategies to reduce falls risk in this cohort are necessary, together with supporting the needs of the caregiver.