Major depressive disorder in late life: A multifocus perspective on care needs

Background: The effectiveness of late-life depression treatment can be improved by tailoring interventions to patients’ needs. Unmet needs perceived by patients suffering from a severe mental illness, e.g. depression, may have a negative impact on their recovery.

Aim: The aim of this study is to gain insight into the needs of outpatients with late-life depression.

Method: Ninety-nine outpatients (aged 58–92) receiving treatment for major depressive disorder were recruited from six specialized mental health care facilities in the Netherlands. They were interviewed using the Dutch version of the Camberwell Assessment of Needs for the Elderly (CANE-NL) to identify met and unmet needs. The Montgomery–Äsberg Depression Rating Scale was administered to measure depression severity.

Results: Depression severity levels varied from remission (23%), mild (31%), moderate (31%) to severe depression (15%). The average number of needs reported was 8.86, comprising 6.5 met needs and 2.3 unmet needs. Most of the unique variance in depression severity was explained by psychological unmet needs, more in particular by needs representing psychological distress. The environmental, social or physical unmet needs, respectively, showed less or no meaningful predictive value for variance in depression severity.

Conclusion: The psychological needs category of the CANE appeared to be the strongest predictor of depression severity. Systematic needs assessment may be considered as a necessary complement to medical examination and a prerequisite for the development of tailored treatment plans for older people with depression.     

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.     

The care needs of older patients with bipolar disorder

Objectives: With aging, bipolar disorder evolves into a more complex illness, with increasing cognitive impairment, somatic comorbidity, and polypharmacy. To tailor treatment of these patients, it is important to study their needs, as having more unmet needs is a strong predictor of a lower quality of life.

Method: Seventy-eight Dutch patients with bipolar I or II disorder aged 60 years and older in contact with mental health services were interviewed using the Camberwell Assessment of Need in the Elderly (CANE) to assess met and unmet needs, both from a patient and a staff perspective.

Results: Patients (mean age 68 years, range 61–98) reported a mean of 4.3 needs compared to 4.4 reported by staff, of which 0.8 were unmet according to patients and 0.5 according to staff. Patients frequently rated company and daytime activities as unmet needs. More current mood symptoms were associated with a higher total number of needs. Less social participation was associated with a higher total number of needs and more unmet needs.

Conclusion: Older bipolar patients report fewer needs and unmet needs compared to older patients with depression, schizophrenia, and dementia. A plausible explanation is that older bipolar patients had higher Global Assessment of Functioning scores, were better socially integrated, and had fewer actual mood symptoms, all of which correlated with the number of needs in this study. The results emphasize the necessity to assess the needs of bipolar patients with special attention to social functioning, as it is suggested that staff fail to recognize or anticipate these needs.     

Remaining connected despite separation – former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home

Objectives: This qualitative study aimed to illuminate former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home.

Method: Ten narrative interviews with former family caregivers were performed and subjected to qualitative content analysis.

Results: An overall theme showed that family caregivers were remaining connected to the person with dementia despite separation. They experienced being ‘caught by surprise’ when the placement occurred. Negative expectations of dementia care made the separation more difficult. Lacking adequate information increased feelings of insecurity. Despite these hurdles, family caregivers found meaning in the new situation as they felt that they could remain connected to their loved one. Being recognized as partners in care of the person with dementia after placement was a facilitating aspect. Family caregivers regarded a well-functioning interaction with staff and a supportive social network as reassuring since they facilitated staying in touch.

Conclusion: Knowledge of the relinquishing process and adequate information about dementia and its progression may help family caregivers better prepare for and adapt to the situation. Family caregivers need to be recognized as partners in care and a welcoming nursing home environment is of utmost importance.     

The meaning of burden of care in a faith-based community: the case of ultra-Orthodox Jews (UOJ)

Objectives: The context of caregiving in the ultra-Orthodox Jewish community is still an uncharted field. We sought to facilitate an in-depth understanding of caregivers in Israel through their views of their position as primary caregivers, their coping mechanisms with the challenges of caregiving burden, and their unfulfilled needs.

Method: Data were drawn from interviews with 28 participants, serving as primary caregivers for at least a year.

Results: Three major themes emerged from the data analysis: (1) burden of care as a universal experience, (2) the faith-based spiritual meaning of caring for parents, and (3) modest needs and expectations from the formal services – a total reliance on the familial-community service system, while there is some indication of unfulfilled needs that should be addressed by the formal service system.

Conclusion: Intervening parties should be aware of the ‘cultural color,’ and not ignore the unique difficulties this population faces. Policy-makers should acknowledge the patterns of non-formal services used in this community.     

Caregiver forgiveness is associated with less burden and potentially harmful Behaviors

Objectives: This study investigated whether caregiver forgiveness of care recipient's (CR's) upsetting behaviors is associated with less burden and potentially harmful behaviors (PHB) by the caregiver.

Method: Seventy-six family caregivers of persons with dementia were recruited by means of convenience sampling through two local dementia service centers in Hong Kong. Caregivers were asked to complete an anonymous questionnaire that assessed CR behavior problems and caregiver burden, PHB and forgiveness.

Results: Results showed that forgiveness partially mediated the associations between CR disruptive behaviors and caregiver burden, and between CR depression and caregiver burden. At the same time, burden partially mediated the relationship between forgiveness and PHB.

Conclusion: The associations between certain behavioral problems and burden were mediated by caregiver forgiveness. Forgiveness also predicted harmful behaviors, both directly and indirectly through burden. Future research should investigate the basis of forgiveness in dementia caregivers and whether forgiveness may constitute another dimension in caregiver interventions.     

Lack of motivation for treatment associated with greater care needs and psychosocial problems

Objective: To compare the care needs and severity of psychosocial problems in older patients with severe mental illness (SMI) between those who were and were not motivated for treatment.

Methods: Cross-sectional study in which we enrolled 141 outpatients with SMI aged 55 and older. Needs were measured using the Camberwell Assessment of Needs for the Elderly, and psychosocial problems with the Health of the Nation Outcome Scale 65+. Motivation for treatment was assessed using a motivation-for-change scale. Parametric and non-parametric tests were used to analyze differences between motivated and non-motivated patients. Explorative logistic regression analyses were used to establish, which unmet needs were associated with motivation.

Results: Less-motivated patients had greater unmet care needs and more psychosocial problems than those who were motivated. Logistic regression analyses showed that lack of motivation was associated with greater unmet needs regarding daytime activities, psychotic symptoms, behavioral problems, and addiction problems.

Conclusions: Lack of treatment motivation was associated with more unmet needs and more severe psychosocial problems. Further research will be needed to identify other factors associated with motivation in older people with SMI and to investigate whether this group of patient benefits from interventions such as assertive outreach, integrated care or treatment-adherence therapy.     

The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: A systematic review

Background: Relatively little attention has been given to the effects of caregiving context on the experience of family members providing care for a person with dementia. This review aims to examine the impact of caregiving on the quality of the relationship between caregiver and care-recipient and the impact of the quality of the relationship between the caregiver and care-recipient on the caregiver's and care-recipient's wellbeing.

Methods: This was a systematic review. Fifteen quantitative studies were identified that examined the quality of the relationship between caregivers and care-recipients who had dementia, meeting the criterion of using a measure of relationship quality beyond a single item.

Results: The findings show that caregiving can have an impact on the quality of the relationship between caregiver and care-recipient. In addition, pre-caregiving and current relationship quality appear to have an impact on caregiver's wellbeing. The care-recipient's needs for help with activities of daily living and level of behavioural problems were found to influence the caregiver's perceptions of relationship quality.

Conclusions: Future research should examine both current and pre-caregiving relationship quality. A better understanding of the role of relationship quality in determining the outcomes of caregiving will aid the development of more effective interventions for caregivers.     

Caregiver depression is associated with a low sense of coherence and health-related quality of life

Objectives: The main objective is to examine the sense of coherence (SOC) of spouse caregivers. The aim was further investigate the association of SOC, health-related quality of life (HRQoL), depressive symptoms, distress and how severity of Alzheimer's disease (AD) affects SOC.

Method: 17O patient–spouse caregiver dyads in which the patient has recently diagnosed mild AD. Caregivers completed SOC scale (SOC-29), HRQoL (15D), Beck depression and general health questionnaire scale. The assessment of AD-related symptoms was made using mini mental state examination, clinical dementia rating, neuropsychiatric inventory and functional performance using activities of daily living (ADCS-ADL) scale.

Results: Male caregivers’ SOC was significantly higher than female caregivers. The main predictor for low SOC was depression, with 37% of spousal caregivers reporting depressive symptoms. Women reported more depressive symptoms and distress. Caregivers’ HRQoL was as high as 0.8714, and a significant correlation was found between SOC and depression, r = ?0.632 and distress r = ?0.579. Furthermore, significant correlations were found between HRQoL and depression (r = ?0.572) and distress (r = ?0.568). The main predictors for high HRQoL were female gender and low distress.

Conclusion: Spouse caregivers with low SOC seem to be a vulnerable group of caregivers. The many negative effects of perceived health accumulate in these caregivers during the very early phases of the caregiving process. Vulnerable caregivers need to be recognized at the time of AD diagnosis so that they can receive psychological support and counselling in addition to prevent morbidity in these caregivers.     

Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia

Objectives: Including the perspectives of persons with dementia (PwD) is essential in order to organize care structures for them. With this systematic review, we set out to screen the existing scientific evidence on self-expressions of community-dwelling individuals with dementia in order to provide a research base for developing an intervention for persons in early stages of the disease. The leading research questions for this review are: What needs do PwD living at home express? What are their subjective demands? What do they do to cope with their situation?

Methods: We performed a systematic literature review of review publications on subjective experiences of PwD. The publications were analysed using MAXQDA 10 to perform a thematic analysis.

Results: We identified 41 relevant reviews, of which 6 met our inclusion criteria. PwD experience the whole range of human emotions. Their needs and demands do not differ significantly from those of other groups of patients with chronic conditions. Coming to terms with the disease and maintaining normality appeared to be major themes. With regard to expectations from the side of professional health care, the need for accompanying, continuous support and counselling appeared to be central. Furthermore, disclosure of diagnosis represents a critical stage for PwD, but our findings indicated that they prefer to be included in this process.

Conclusions: PwD are well able to express their needs. They should be included in research since they can provide valuable findings. Furthermore, those findings should be implemented in applied dementia care.     

Tailored mental health care after nursing home admission: improving transfers of people with dementia with behavioral problems. An explorative study

Objectives: In the Netherlands, many community-dwelling people with dementia and behavioral disturbances and their family caregivers receive mental health care from a community psychiatric nurse (CPN). To promote continuity of care for these persons after moving to a nursing home, a transfer intervention was developed. The aim of this explorative study was to evaluate this intervention and its implementation.

Method: A qualitative explorative study design was used. CPNs visited professional nursing home carers, people with dementia and family caregivers six weeks after moving, advised on how to manage behavioral problems of their former clients and provided support to family caregivers. Twenty-two interviews were conducted with participants exposed to the intervention (5 CPNs, 5 family and 12 nursing home carers) and with 11 stakeholders (i.e., nursing home and mental health care managers, professional caregivers) to identify facilitators and barriers to the implementation. Data were collected in 2012 and 2013.

Results: The follow-up visit at six weeks met the need for background information of new admitted patients and helped family caregivers close off the period prior to the move. It did not meet the original purpose of providing nursing home staff with advice about problem behaviors on time: six weeks after the move was experienced as too late.

Conclusion: The transfer intervention increased the awareness of nursing home staff about personal and behavioral characteristics of residents with dementia and supported caregivers in coping with the new situation. The timing of the intervention could be improved by scheduling it immediately after the move.     

What are the essential features of resilience for informal caregivers of people living with dementia? A Delphi consensus examination

Objectives: Few studies have examined what might enable or prevent resilience in carers of people with dementia. Consequently, there are limited insights as to how it should be understood, defined and measured. This creates challenges for research, and also practice in terms of how it might best be promoted. This study aimed to address these limitations and add new insights, identifying the essential features of resilience in dementia caregiving.

Methods: A Delphi consensus study was conducted, consulting a multi-disciplinary panel of informal caregivers and experts with relevant professional expertise. Panellists rated the relevance of various statements addressing essential components of resilience; ‘adversity’ and ‘successful caregiving’ on a 5-point Likert scale. Based on the median and Inter Quartile Range, the most relevant statements with moderate consensus were proposed in Round 2 in which panellists selected up to five statements in order of importance.

Results: Moderate consensus was reached for all statements after two rounds. Patients’ behavioural problems and feeling competent as a caregiver were selected by both caregivers and professionals as essential resilience features. Caregivers also emphasized the importance of social support, the quality of the relationship with their relative and enjoying spending time together. Professionals considered coping skills, experiencing positive aspects of caregiving, and a good quality of life of caregivers most relevant.

Conclusion: The essential elements of resilience selected from multiple stakeholder perspectives can be used to select appropriate outcomes for intervention studies and give guidance to policy to support caregivers more effectively and better tailored to their needs.     

Do determinants of burden and emotional distress in dementia caregivers change over time?†

Objectives: Caring for a patient with dementia is a real challenge and can have considerable psychological consequences in the long run. Many caregivers, mostly relatives, feel highly burdened. To develop effective caregiver support to prevent caregivers from getting overburdened, insight is needed into the determinants of burden. The objective of this study is to explore which patient and caregiver characteristics determine the different kinds of caregiver burden over time, both in the short and in the long run.

Method: The study was longitudinal. Data on patients and caregivers, general burden and emotional distress were collected at three times: at baseline, at the end of treatment and at nine months. The study was conducted in a psychiatric skilled nursing home with a unit for integrative reactivation and rehabilitation (IRR) and at different sites of home-/day care, assisted living arrangements and nursing home wards (usual care).

Results: General burden is shown to be determined by severity of patient's neuropsychiatric symptoms, caregiver's sense of competence, health-related quality of life. Emotional distress is determined by severity of patient's neuropsychiatric symptoms, caregiver's sense of competence, high affiliation and patient gender.

Conclusion: In preventing or treating caregiver burden, professional interventions need to aim specifically at diminishing the neuropsychiatric symptoms in dementia patients and improving the sense of competence in caregivers.     

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator

Objectives: The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan.

Method: This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal.

Results: Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant.

Conclusion: Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.     

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.     

Sleep complaints and their association with comorbidity and health-related quality of life in an older population in Sweden

Objective: The relationship between sleep complaints, comorbidity and health-related quality of life (HRQoL) in advanced age has not been clearly established. The aim of this study is therefore to investigate the presence of sleep complaints and discuss their association with morbidity and the HRQoL among the people aged 60 years and above.

Methods: Data regarding demography, sleep, comorbidity and HRQoL were collected through questionnaires and interviews among 1128 people in Sweden. The Johns Hopkins adjusted clinical groups (ACG®) Case-Mix System 6.0 and the Short-Form Health Survey-12 were used to assess morbidity and HRQoL, respectively.

Results: There was a divergence in the number of sleep complaints between those with no morbidity and those who had a high degree of comorbidity. Most of the sleep complaints related to low HRQoL were found among those with a high degree of comorbidity.

Conclusions: People with a high degree of comorbidity appear to be a group with a high risk of having both sleep complaints and a low HRQoL. Thus, this study suggests that even if sleep complaints appear to be difficult to identify and treat successfully, it is important to pay particular attention to those people who suffer from a high degree of comorbidity if their HRQoL is to be maintained.     

Group living homes for older people with dementia: The effects on psychological distress of informal caregivers

Objectives: The aim of this study was to investigate the effects of group living care for people with dementia on the psychological distress of informal caregivers, compared with regular nursing home care.

Method: This study had a quasi-experimental design with two measurements. 67 primary informal caregivers in 19 group living homes and 99 primary informal caregivers in seven regular nursing homes filled in a questionnaire upon admission (baseline measurement) of their relative and six months later (effect measurement). Linear and logistic regression analyses were performed on three outcomes of psychological distress – psychopathology, caregiving competence and caregiver burden.

Results: There were no significant differences in caregiver competence and caregiver burden between informal caregivers of residents in group living homes and those in regular nursing homes, although there was a trend towards less psychopathology in group living homes after adjustment for confounding.

Conclusion: Informal caregivers of residents in group living homes do not have less psychological distress than informal caregivers of residents in regular nursing homes. Although there was a trend towards less psychopathology in informal caregivers of group living homes, the amount of symptoms remained very high in both caregiver groups. This means that the psychological well-being of caregivers deserves the continuing attention of health care providers, also after admittance of their relative in a nursing home facility.     

Respite service use among caregivers of older people: comparative analysis of family dementia caregivers with musculoskeletal and circulatory system disorder caregivers

Objectives: To identify the main drivers of the use of respite services and the need for respite services among caregivers of people experiencing dementia relative to family caregivers of people with other health conditions.

Method: Based on nationally representative secondary data regression analysis was used to test the association between selected health conditions and the utilisation of and need for respite services.

Results: For a person living with dementia the odds of using respite care are higher than for a person with either a musculoskeletal or circulatory condition. Family caregivers of people living with dementia report the odds of the need for more respite as 5.3 times higher than for family caregivers of people with musculoskeletal conditions and 7.7 times higher than for family caregivers of people with circulatory conditions. The main reason for never using respite services is largely driven by the type of health condition, age of care recipient, existence of a spouse, and level of disability.

Conclusions: Respite services that cater to the specific needs of families experiencing dementia at home should become a higher priority within the aged care sector. Alternative models of respite care that focus on prevention and early intervention would be cost effective.     

Study protocol Implementation of the Veder contact method (VCM) in daily nursing home care for people with dementia: an evaluation based on the RE-AIM framework

Objectives: People with dementia in nursing homes benefit from person-centred care methods. Studies examining the effect of these methods often fail to report about the implementation of these methods. The present study aims to describe the implementation of the Veder contact method (VCM) in daily nursing home care.

Method: A process analysis will be conducted based on qualitative data from focus groups with caregivers and interviews with key figures. To investigate whether the implementation of VCM is reflected in the attitude and behaviour of caregivers and in the behaviour and quality of life of people with dementia, a controlled observational cohort study will be conducted. Six nursing home wards implementing VCM will be compared with six control wards providing Care As Usual. Quantitative data from caregivers and residents will be collected before (T0), and 9–12 months after the implementation (T1). Qualitative analysis and multilevel analyses will be carried out on the collected data and structured based on the constructs of the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance).

Conclusion: By using the RE-AIM framework this study introduces a structured and comprehensive way of investigating the implementation process and implementation effectiveness of person-centred care methods in daily dementia care.     

Social care and support needs of community-dwelling people with dementia and concurrent visual impairment

Objectives: This study explored the social care and support needs of people with dementia and visual impairment, and the barriers and facilitators for meeting these needs.

Method: Twenty-six semi-structured interviews were conducted: 21 joint and 5 individual interviews with the person with dementia and visual impairment (n=4) or their family/paid carer (n=1). Interviews were analysed thematically.

Results: Three themes are presented. (1) Social care needs: having dementia can reduce an individual's ability to cope with their visual impairment, and lead to increased dependency and reduced daily stimulation. (2) Barriers to using technology to meet social care needs: difficulties were reported with learning to use unfamiliar technology and the cost of visual impairment aids, and for some, the presence of dementia made visual impairment aids unusable and vice versa. (3) Familiarity as a facilitator for meeting social care needs: living at home or taking furnishings and ornaments into a new home facilitated independence, and continuity of paid carers/volunteers facilitated the caring relationship between the individual and staff/volunteer.

Conclusion: Care workers will better serve older people if they are aware of the social care and support needs that arise from having both dementia and visual impairment.