Maintaining the potential of a psycho-educational program: efficacy of a booster session after an intervention offered family caregivers at disclosure of a relative's dementia diagnosis.

BACKGROUND: Booster sessions as a means of maintaining the benefits of psycho-educational programs have received little attention in caregiving research. Caregivers were offered a booster session following participation in a program entitled Learning to Become a Family Caregiver (LBFC) intended to facilitate transition to the caregiver role after diagnostic disclosure of dementia in a relative. The 90-minute booster session served to review program content and afforded the opportunity to discuss and practice learned skills. This study sought to test the efficacy of the booster session in maintaining or recovering program effects at six months post-program. METHOD: Participants in the program were randomly assigned to a group that received the booster session (n = 31) or a group that did not (n = 29). A third control group was also formed, which continued to receive only the usual care provided in memory clinics. Eligible participants - French-speaking primary caregivers of a relative diagnosed with Alzheimer's in the past nine months - were recruited in memory clinics in Quebec (Canada). Participants were blindly assessed before randomization and six months after the booster session on outcomes associated with a healthy role transition. RESULTS: Prediction analyses revealed one significant positive effect of the booster session: emergence of preparedness to provide care. Moreover, with or without the booster session, the program continued to have a positive effect on psychological distress and contributed to the emergence of self-efficacy in dealing with caregiving situations. The booster session had no significant effect on knowledge of services, planning for future care needs, use of reframing as a coping strategy, perceived informal support, and family conflicts. CONCLUSION: The limited effect observed is discussed in terms of the booster session's content and intensity. Recommendations are made for designing future research on the effect of booster sessions, including the importance of including a placebo booster group.

Unmet support needs of early-onset dementia family caregivers: a mixed-design study.

BACKGROUND: Though advances in knowledge and diagnostics make it possible today to identify persons with early-onset dementia or a related cognitive disorder much sooner, little is known about the support needs of the family caregivers of these persons. The aim of this study was to document the unmet support needs of this specific group of caregivers. This knowledge is essential to open avenues for the development of innovative interventions and professional services tailored to their specific needs. METHODS: This study was conducted using a mixed research design. Participants were 32 family caregivers in their 50s recruited through memory clinics and Alzheimer Societies in Quebec (Canada). The Family Caregivers Support Agreement (FCSA) tool, based on a partnership approach between caregiver and assessor, was used to collect data in the course of a semi-structured interview, combined with open-ended questions. RESULTS: The unmet support needs reported by nearly 70% of the caregivers were primarily of a psycho-educational nature. Caregivers wished primarily: (1) to receive more information on available help and financial resources; (2) to have their relatives feel valued as persons and to offer them stimulating activities adjusted to their residual abilities; (3) to reduce stress stemming from their caregiver role assumed at an early age and to have the chance to enjoy more time for themselves; and (4) to receive help at the right time and for the help to be tailored to their situation of caregiver of a young person. CONCLUSIONS: Results show numerous unmet support needs, including some specific to this group of family caregivers. Use of the FCSA tool allowed accurately assessing the needs that emerged from mutual exchanges. Avenues for professional innovative interventions are proposed.

[A useful test for evaluating the needs for support of family members--help for an aged parent at home: a tool with potential application in French-speaking Europe]. / Mise à l'essai d'un outil d'évaluation des besoins de soutien des proches--aidants d'un parent âgé à domicile: un outil ayant un potentiel d'application en Europe francophone.

The Family Caregivers Support Agreement (FCSA) tool, based on a caregiver-service provider partnership approach to assess the support needs of family caregivers of a home-living aging relative, was field-tested to document its relevance for use in Quebec (Canada) practice settings. The FCSA tool is a modified version of the Carers Outcome Assessment Tool, initially developed as the result of an Anglo-Swedish Study. The field test was conducted with 17 French- and English-speaking caregivers and revealed numerous unmet caregiver needs, especially of a psycho-educational nature. The use of the FCSA tool lead to an identification of homecare support services which corresponded to caregiver needs and expectations. According to the homecare services providers interviewed, the FCSA tool offers a structured and flexible approach that facilitates the identification of services sensitive to caregiver needs. The instrument allows concretizing the partnership process, in particular, by bringing to light the unique needs of individual caregivers, empowering caregivers by considering them active participants in decision making, and fostering a proper fit between services and needs. Results are in line with those of other studies, suggesting that the caregiver role entails common core needs and that the impact of the FCSA tool is comparable regardless of practice setting. All told, the FCSA tool could potentially be applied in the French-speaking Europe.

Development of an intervention program for Alzheimer's family caregivers following diagnostic disclosure.

The purpose of this qualitative study was to develop a pro-active psycho-educational intervention program for Alzheimer's family caregivers following diagnostic disclosure. Based on a theoretical model of role transitions and a participatory approach, the study comprised four steps: (a) exploring caregiver needs; (b) developing and validating a program proposal based on caregiver-expressed needs; (c) formalizing program through intervention mapping; and (d) testing and qualitatively evaluating the program. The psycho-educational program consisted of seven individual sessions aimed at fostering knowledge and skills required to ensure successful transition to the caregiver role. The approach used in this study can serve as a guide for the development of nursing intervention programs. Intervention mapping allowed, in particular, integrating theoretical and empirical elements in a formal intervention model.

[Validation of a tool for family caregivers]. / Validation d'un outil pour les proches-aidants.

The purpose of this transcultural study was to translate and adapt for the province of Quebec (Canada) a tool for assessing the support needs of family caregivers of aging persons, as well as to validate the relevance and feasibility of its utilization in Quebec homecare services. Developed jointly in the United Kingdom and Sweden and based on a caregiver-service provider partnership process, the Carers Outcome Agreement Tool (COAT) is presently the focus of a large-scale implementation study in Sweden. Following parallel back-translation and adaptation, the tool, entitled Entente sur le Soutien aux Proches-Aidants (ESPA) in French, was validated in terms of relevance and feasibility via focus groups with service providers and interviews with family caregivers. Results show the ESPA to be a culturally sensitive tool that systematically identifies the support needs of caregivers and indicates the type of help best suited to meet these needs. As with other European studies, the results suggest that the caregiver role comprises a common core of needs and highlights the tool's potential for transfer to the cultural context of French-speaking Europe.

[Home care in a culturally sensitive environment: perspectives of caregivers of Haitian elderly patients and relatives]. / Des services à domicile culturellement sensibles: perspective des intervenants et des proches-aidantes originaires d'Haïti en tant que cas traceur.

In Canada, the care provided by families occurs in an increasingly multiethnic context. Against this backdrop, the present qualitative study aims to explore the needs/expectations and solutions not only of (female) natural caregivers of an elderly relative hailing from Haiti (presented in terms of tracking cases) but also of remunerated home care providers - all with a view to developing a culturally sensitive service offering. As such, this study works from a conceptual framework centring on the negotiation of a common area of agreement between the stakeholders involved (i.e., natural caregivers and home care providers). To this end, focus groups and individual interviews were conducted among 15 caregivers and 37 home care providers. The three recurrent themes emerging from the data analysis concern, in context, the needs/expectations and solutions surrounding the experience of service use, barriers to use, and the relationships between natural caregivers and home care providers. The statements of both groups evidenced a consistency of views and have thus provided a basis for developing some recommendations acceptable to all stakeholders from the perspective of making culturally-based adjustments to the service offering.

The health of family caregivers of older impaired persons in Lebanon: an interview survey.

BACKGROUND: The majority of older persons in Lebanon live with their family, which provides the help and care required when their relative is functionally impaired. Knowing that taking care of an older impaired relative is considered a source of enrichment for the caregiver and an act of gratitude towards the older person in Lebanon. However, there are few formal resources to support these families. This study is informed by a theoretical framework of stress. OBJECTIVE: Identify the dimensions of the caring context related to the health of Lebanese family caregivers living with an older impaired relative. DESIGN: Exploratory correlational study. PARTICIPANTS: Convenience sample (N=319) drawn from all the regions of Lebanon according to predetermined quotas on the basis of relative demographic weight and socio-economic class. The inclusion criteria are: aged 18 years or over; primary caregiver; provided help with at least one ADL or IADL once a week; lived with the older impaired person. 13.5% refused to participate in the study. The caregivers recruited were female (84%), adult children (48%) or spouses (22.6%) with a mean age of 46 years. Almost half of them reported a post-compulsory level of education and a low monthly household income and no medical coverage for 68% of them. METHODS: The data were collected during a face-to-face interviews with the caregivers in their homes. RESULTS: The results from regression analyses indicate that the degree of functional impairment, the frequency of depressive and disruptive behaviours of cared-for relative are linked to at least one of three caregiver health indicators (p<.01). Also, caregiver cognitive appraisal of these stressors is associated with either role strain or feeling of helplessness (p<.05). The informal emotional support received by caregivers is positively related to well-being (p<.001), whereas interpersonal conflicts with family and friends diminish caregiver well-being and increase role strain (p<.001). Sufficiency of emotional support received is negatively associated with role strain (p<.001). CONCLUSION: Many stressors proved associated with one or other of the health indicators under study and the resources emerged as significant factors related to caregiver's health.

Older husbands as caregivers of their wives: a descriptive study of the context and relational aspects of care.

The purpose of this study was to describe the context and relational aspects that characterize male caregiving. The sample comprised 323 older husbands caring for their wives in Quebec (Canada). Nearly 60% of them spent at least 84 h/week caregiving and about 40% regularly performed personal care and instrumental tasks. Family provided emotional support above all and service utilization was limited for certain services. Husbands perceived relational deprivation but also personal gain relative to their role. Conflicts seldom occurred with family members. Comparisons between husbands of wives with and without memory problems revealed selected differences on context and relational variables. This study contributes to knowledge on male caregivers and provides directions for nursing practice and research.

A training program for managing agitation of residents in long-term care facilities: description and preliminary findings.

The purpose of this article is to describe a training program for managing agitation of long-term care residents and to report results of a pilot study. The program emphasizes the development of behavioral skills for the assessment, prevention, and reduction of both aggressive and non-aggressive agitated behavior. It includes 8 hours of class instruction followed by 8 hours of weekly supervision by the trainers. The nursing staff of all working shifts of a unit located in a large nursing home and the residents of this unit participated in the pilot study. Residents and staff were assessed prior to and after the 2-month training program. Staff members reported using behavioral techniques to a greater extent and feeling more effective in managing agitation after training. More than 90% of staff members were satisfied with the training program. During the supervision period, the staff developed and implemented individualized interventions for two residents. The interventions involved providing more attention to these residents and, in one case, modifying some aspects of the direct environment which seemed to trigger agitation. Both residents were less agitated after the interventions were implemented. Moreover, there was a reduction in the number and frequency of agitated behaviors for the other residents of the trainees' unit following staff training.

[Caregivers of elderly people with loss of autonomy in Lebanon: what is the context of their health care?]. / Les aidants familiaux de personnes agées en perte d'autonomie au Liban: quel est leur contexte de soin?

The primary objective of this pan Lebanese study was to describe the health care context of family caregivers cohabiting with an elderly relative with loss of autonomy while the secondary objective consisted in the qualitative documentation of their positive and negative perceptions as to the role of the caregivers. The study uses a theoretical framework of stress. The results indicate that the caregivers (N = 319) take care of relatives (40% with memory troubles) having a moderate level of loss of autonomy and who present more depressive behaviors than "disturbing" behaviors. The caregivers are particularly affected by the behaviors of their relatives. They accomplish several health care tasks and very few receive formal services to support them. Their neighborhood offers them more emotional support than instrumental support. More caregivers perceive positive aspects than negative aspects in their role. Recommendations are formulated to guide the elaboration of a national policy of support to caregivers and the development of innovative community care practices.

Efficacy of a psychoeducative group program for caregivers of demented persons living at home: a randomized controlled trial.

OBJECTIVES: To test the efficacy of a psychoeducative group program for informal caregivers of persons with dementia. METHODS: The study was a multicenter randomized controlled trial. Randomization was stratified according to sex and kinship. Participants randomized to the control group were referred to the traditional support groups. Participants in the study group had fifteen 2-hr weekly sessions focusing on stress appraisal and coping. Eligible participants (primary caregivers of community-dwelling persons with dementia) were blindly assessed before the randomization and after 16 weeks on the following measures: frequency and reactions to behavioral problems (primary outcome), burden, psychological distress, anxiety, perceived social support, and personal efficacy. RESULTS: A total of 158 participants were randomized to the study (n = 79) and control (n = 79) groups in 12 successive waves. Results show that study participants presented a 14% decrease in their reactions to the behavioral problems of the care-receivers as opposed to a 5% decrease in the control group ( p =.04). The frequency of behavior problems also decreased ( p =.06), as did the cross-product frequency/reaction ( p =.02). There was no significant effect on the secondary outcome variables. DISCUSSION: This is one of the first studies showing a significant effect of this type of support group program on the caregivers of participants with dementia.

[Intervention to promote recognition of the rights of families of an elderly relative with dementia living in a long-term care facility]. / Intervention pour promouvoir la reconnaissance des droits des familles d'un parent âgé atteint de démence en milieu d'hébergement.

The rights of families of an institutionalized elderly relative with dementia have yet to be recognized. The results of our pilot study based on a participatory approach show, among other things, that family caregivers, women for the most part, have little input in the decisions regarding their relative's care and are uneasy to express their opinions to health care staff. As part of the pilot study, caregivers developed a group intervention program entitled "Taking Care of Myself" geared, among other things, towards increasing their competence in expressing their viewpoint to health care staff and in taking part in care-related decisions. According to an efficacy study conducted after the pilot study, the program produced successful outcomes in terms of caregiver competence in dealing with the health care staff and of perceived challenge of the caregiver situation. Recommendations are made aimed at giving caregivers recognition, that is their due.

Challenges associated with transition to caregiver role following diagnostic disclosure of Alzheimer disease: a descriptive study.

BACKGROUND: The prevalence of Alzheimer's disease is rising. The large number of new cases identified each year means that many new families will set upon a long trajectory of caring for a relative with dementia. Diagnostic disclosure of Alzheimer's disease marks the official transition to the caregiver role, yet this early period of the caregiver career have rarely been studied. OBJECTIVES: Based on Meleis's theoretical framework for role transition, the objectives of this study were to document the characteristics of the caregiving context during the transition to the caregiver role following diagnostic disclosure of Alzheimer's disease and to compare these characteristics by caregiver gender and kinship tie to the relative. DESIGN SETTINGS AND PARTICIPANTS: A descriptive design was used. Data were collected using standardized measures selected in accordance with the role transition theoretical framework. The sample recruited in Quebec (Canada) cognition clinics comprised 122 caregivers of an elderly relative diagnosed with Alzheimer's disease in the past nine months. RESULTS: Findings reveal the context of care to be marked by several challenges for caregivers. The majority of caregivers receives little informal support, has poor knowledge of available formal services, and has difficulty planning ahead for the relative's future care needs. Caregivers themselves report a lack of preparedness to provide care. Compared with men caregivers, women seem to have more problems controlling disturbing thoughts about their new caregiver role and to experience more family conflicts and psychological distress. Compared with offspring caregivers, spouse caregivers are less able to respond to the relative's disruptive behaviors, make less use of problem-solving strategies, and report fewer family conflicts. CONCLUSIONS: The challenges faced by caregivers during the transition to the caregiver role are sensitive to nursing interventions. Pro-active interventions from the outset of the caregiving career, such as early assessment of caregiver needs for support and of caregiver preparedness to provide care as well as early psycho-educational interventions, are essential to foster positive caregiver responses to the challenges of their new role.

"Learning to become a family caregiver" efficacy of an intervention program for caregivers following diagnosis of dementia in a relative.

PURPOSE: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. DESIGN AND METHODS: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition. RESULTS: The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts. IMPLICATIONS: This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet.

A partnership approach to service needs assessment with family caregivers of an aging relative living at home: a qualitative analysis of the experiences of caregivers and practitioners.

BACKGROUND: As the global population ages, support for family caregivers who provide the bulk of care to community-dwelling older people is becoming ever more important. However, in many countries, homecare-service practitioners currently do not follow a systematic approach to assessing and responding to caregiver needs. OBJECTIVES: The aim of this study was to explore the experiences of caregivers and practitioners who took part in a field test of the Family Caregivers Support Agreement (FCSA) tool, a modified version of the Carers Outcome Agreement Tool (COAT) initially developed as the result of an Anglo-Swedish study. Both the COAT and the FCSA are designed to facilitate partnerships between caregivers and practitioners so that needs assessment and subsequent support services are negotiated and agreed so as to meet caregiver expectations. DESIGN AND PARTICIPANTS: A qualitative design was adopted and data were collected through focus groups with six practitioners (nurses and social workers) working in two Local Community Service Centres in the province of Quebec (Canada). These practitioners had previously completed the FCSA tool with 17 primary caregivers of frail elderly relatives who were clients of homecare services. Individual interviews were conducted with the caregivers to explore their experiences. Data were analyzed to identify significant themes, from the perspectives of caregivers and practitioners, which provided insights into their experiences and the strategies used by practitioners to facilitate partnership working. FINDINGS: To facilitate meaningful exchanges, practitioners adopted strategies such as sensitive listening and the use of enabling questions to identify and contextualize caregiver needs and to highlight the ability of caregivers to find their own creative solutions to the challenges they face. The caregivers described experiencing a climate of trust that allowed them to express their concerns, to reflect upon their situation and to participate in the development of an action plan for their support. CONCLUSIONS: The study reaffirms findings from Sweden and UK that the use of a tool such as the FCSA enhances partnership working and creates a caregiver-practitioner relationship based on a genuine alliance. As a result, both parties gain new insights into the caring situation. The approach underpinning the FCSA tool has potential for a more widespread application in different contexts.

Predicting longitudinal patterns of psychological distress in older husband caregivers: further analysis of existing data.

Further analysis of existing data from a previous longitudinal study of older husband caregivers sought to determine whether primary objective and subjective stressors drawn from Pearlin's model of caregiving could predict three patterns of psychological distress observed in the sample over 1 year: (a) stable high (n=115), (b) stable low (n=44), and (c) rising (n=46). Results of discriminant function analyses show that subjective stressors (level of role overload, role captivity and relational deprivation) at baseline, distinguish the stable low group of husbands from the stable-high. The results suggest that there is considerable stability over time. Many husband caregivers report high-psychological distress and need help, whereas there is a need of preventive interventions to keep psychological distress low. Implications for singular interventions that target specific factors according to group membership are discussed.

Changes in health outcomes among older husband caregivers: a one-year longitudinal study.

This one-year longitudinal study carried out on a sample of 232 older husband caregivers sought to describe changes in psychological distress and self-perceived health, and to examine relationships between factors drawn primarily from Pearlin's model of caregiving and changes in these two health outcomes. Prediction analyses shows that nearly two thirds of the husbands have unsuccessful outcomes with respect to these two dimensions, that is, most husbands obtain either steadily poor scores at both times of the study or worse scores on one or both outcomes. Higher levels of education and informal instrumental support at time 1, as well as an increase in role overload, are predictive of unsuccessful outcome for psychological distress, whereas an increase in self-efficacy predicts successful outcome for self-perceived health. Overall, husband caregivers vary in their response to caregiving over time. The findings support previous study results showing subjective stressors, rather than objective stressors, and caregiver resources to be significant predictors of caregiving outcomes.

Association of unmet need with self-rated health in a community dwelling cohort of disabled seniors 75 years of age and over.

Self-rated health (SRH) is a measure of perceived health that has been shown to predict use of community services, functional decline, pain, and mortality. Many factors associated with SRH have been identified, but unmet need for physical assistance with activities of daily living (ADL) has not yet been examined. The objective of this paper is to examine the association between unmet need and SRH while accounting for the effects of other, previously identified, correlates of SRH. We conducted a secondary analysis of a population-based study of 839 residents of Montréal, Québec who were 75 years of age or older, not cognitively impaired, and living in the community. Multivariable logistic regression was used to evaluate the association between met and unmet personal ADL (PADL) and instrumental ADL (IADL) need for physical assistance with SRH. Among 508 disabled community-dwelling elderly, for each additional unmet IADL need, subjects were 1.70 (95% CI: 1.11-2.61) times more likely to report poorer SRH. For each additional unmet PADL need, subjects were 2.26 (95% CI: 1.31-3.91) times more likely to report poorer SRH. Subjects at increased risk of malnutrition, with greater comorbidity and whose income was insufficient to meet their needs were also more likely to report poorer SRH. After adjustment for important correlates, unmet PADL and IADL needs retain a statistically significant association with poorer SRH, with nutritional status, comorbid conditions, and income satisfaction being important confounders of the relationship.

Follow-up of an intervention program for caregivers of a relative with dementia living in a long-term care setting: Are there any persistent and delayed effects?

The purpose of this randomized study was to test the persistent and delayed effects of an intervention program entitled "Taking Care of Myself " on selected mental health outcomes of daughter caregivers of a relative with dementia living in a long-term care setting. One group of caregivers took part in the experimental program (EG, n = 45), one in a comparison program offered by an Alzheimer Society (AG, n = 51), and another constituted a control group (CG, n = 41). Effects were verified at the end of the program and 3 months later. Results from prediction analyses reveal that competence dealing with healthcare staff and use of the coping strategy of reframing were persistent effects unique to the EG condition, whereas perceived availability of informal and formal support was a persistent effect in the EG and in the AG. A delayed effect was observed in the AG regarding competence dealing with healthcare staff. These results underline the importance of follow-up assessments of intervention programs and suggest avenues to support caregivers of institutionalized seniors.