Recovery from burden: informal caregiver profiles that predict treatment success.

ABSTRACTBackground:Neuropsychiatric symptoms (NPI) of dementia are important determinants of caregiver burden, while caregiver coping styles and competences can relieve burden. Caregivers differ in coping with the demands made on them and in experienced burden. What changes in caregivers explain recovery from burden, and which caregiver characteristics predict recovery from burden over time, and does treatment make a difference? METHODS: This study into recovery from burden was a secondary analysis of data collected in a formerly conducted randomized controlled trial (RCT) on the integrated reactivation and rehabilitation (IRR) programme in a psychiatric-skilled nursing home, compared to usual care (UC; i.e. day care, assisted living arrangements, and nursing home wards). For this secondary analysis, longitudinal data on persons with dementia and caregivers were used from baseline (T1), end of treatment (T2), and at nine months (T3). RESULTS: Caregivers with an improved sense of competence (SCS) who care for persons with dementia with a decreased severity of NPI have the highest chance of recovering from burden (CSI). Caregivers with a tendency to feel involved with others and sympathize with others (affiliation, ICL-R) have a slightly lower probability of improvement with respect to their sense of competence in the short term. The number of improved caregivers was higher in IRR than UC. CONCLUSION: Recovery depends on both an improved sense of competence and a decreased severity of NPI. Combined interventions that address both NPI and focus on enhancing caregiver's sense of competence have added value when it comes to decreasing caregiver burden.

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.

[User friendliness of computer-based cognitive training for psychogeriatric patients with mild to moderate cognitive impairments]. / Gebruiksvriendelijkheid van computerondersteunde cognitieve training bij psychogeriatrische patiënten met lichte tot matige cognitieve functiestoornissen.

Cognitive impairment associated with dementia is characterized by a continuous decline. Cognitive training is a method to train specific brain functions such as memory and attention to prevent or slow down cognitive decline. A small number of studies has shown that cognitive training on a computer has a positive effect on both cognition and mood in people with cognitive impairment. This pilot study tested if serious games could be integrated in a psychogeriatric rehabilitation center. Fourteen psychogeriatric patients participated twice weekly in cognitive training sessions on a computer. Both the participants and the facilitator reported positive interactions and outcomes. However, after five weeks only half of the sample still participated in the training. This was partly because of patient turn-over as well as incorporating this new task in the facilitators' daily work. Fear of failure, physical limitations and rapidly decreasing cognitive function led to drop out according to the facilitator. The engagement of patients in the games and the role of the facilitator seemed essential for success, especially monitoring (and adjusting) the difficulty level of the program for every individual participant.

Benefit of an integrative psychotherapeutic nursing home program to reduce multiple psychiatric symptoms of psychogeriatric patients and caregiver burden after six months of follow-up: a re-analysis of a randomized controlled trial.

BACKGROUND: In this paper, we aim to test the long-term benefit of an integrative reactivation and rehabilitation (IRR) program compared to usual care in terms of improved psychogeriatric patients on multiple psychiatric symptoms (MPS) and of caregivers on burden and competence. Improvement was defined as >30% improvement (≥ a half standard deviation) compared to baseline. METHODS: We used the following outcome variables: difference in the number of improved patients on MPS (Neuropsychiatric Inventory, NPI) and improved caregivers on burden (Caregiver Burden, CB) and competence (Caregiver Competence List, CCL). Assessments were taken after intake (T1) and after six months of follow-up (T3). Risk ratios (RR), number needed to treat (NNT), and odds ratios (ORs) were calculated. RESULTS: IRR had a significant positive effect on NPI-cluster hyperactivity (RR 2.64; 95% CI: 1.26-5.53; NNT 4.07). In the complete cases analysis, IRR showed significant ORs of 2.80 on the number of NPI symptoms and 3.46 on the NPI-sum-severity; up to 76% improved patients. For caregivers, competence was a significant beneficiary in IRR (RR 2.23; 95% CI: 1.07-4.62; NNT 5.07). In the complete cases analysis, the ORs were significantly in favor of IRR on general burden and competence (ORs range: 2.40-4.18), with up to 71% improved caregivers. CONCLUSION: IRR showed a significantly higher probability of improvement with a small NNT of four on multiple psychiatric symptoms in psychogeriatric patients. The same applies to the higher probability to improve general burden and competence of the caregiver with an NNT of five. The results were even more pronounced for those who fully completed the IRR program. (Inter)national psychogeriatric nursing home care and ambulant care programs have to incorporate integrative psychotherapeutic interventions.

Economic evaluation alongside a single RCT of an integrative psychotherapeutic nursing home programme.

BACKGROUND: There is an 80% prevalence of two or more psychiatric symptoms in psychogeriatric patients. Multiple psychiatric symptoms (MPS) have many negative effects on quality of life of the patient as well as on caregiver burden and competence. Irrespective of the effectiveness of an intervention programme, it is important to take into account its economic aspects. METHODS: The economic evaluation was performed alongside a single open RCT and conducted between 2001 and 2006. The patients who met the selection criteria were asked to participate in the RCT. After the patient or his caregiver signed a written informed consent form, he was then randomly assigned to either IRR or UC.The costs and effects of IRR were compared to those of UC. We assessed the cost-utility of IRR as well as the cost-effectiveness of both conditions. Primary outcome variable: severity of MPS (NPI) of patients; secondary outcome variables: general caregiver burden (CB) and caregiver competence (CCL), quality of life (EQ5D) of the patient, and total medical costs per patient (TiC-P). Cost-utility was evaluated on the basis of differences in total medical costs). Cost-effectiveness was evaluated by comparing differences of total medical costs and effects on NPI, CB and CCL (Incremental Cost-Effectiveness Ratio: ICER). CEAC-analyses were performed for QALY and NPI-severity. All significant testing was fixed at p<0.05 (two-tailed). The data were analyzed according to the intention-to-treat (ITT)-principle. A complete cases approach (CC) was used. RESULTS: IRR turned out to be non-significantly, 10.5% more expensive than UC (€ 36 per day). The number of QALYs was 0.01 higher (non-significant) in IRR, resulting in € 276,290 per QALY. According to the ICER-method, IRR was significantly more cost-effective on NPI-sum-severity of the patient (up to 34%), CB and CCL (up to 50%), with ICERs varying from € 130 to € 540 per additional point of improvement. CONCLUSIONS: No significant differences were found on QALYs. In IRR patients improved significantly more on severity of MPS, and caregivers on general burden and competence, with incremental costs varying from € 130 to € 540 per additional point of improvement. The surplus costs of IRR are considered acceptable, taking into account the high societal costs of suffering from MPS of psychogeriatric patients and the high burden of caregivers. The large discrepancy in economic evaluation between QALYs (based on EQ5D) and ICERs (based on clinically relevant outcomes) demands further research on the validity of EQ5D in psychogeriatric cost-utility studies. (Trial registration nr.: ISRCTN 38916563; December 2004).

Integrative psychotherapeutic nursing home program to reduce multiple psychiatric symptoms of cognitively impaired patients and caregiver burden: randomized controlled trial.

OBJECTIVE: To test the effectiveness of an integrative psychotherapeutic nursing home program (integrative reactivation and rehabilitation [IRR]) to reduce multiple neuropsychiatry symptoms (MNPS) of cognitively impaired patients and caregiver burden (CB). DESIGN: Randomized controlled trial. SETTING: Psychiatric-skilled nursing home (IRR) and usual care (UC), consisting of different types of nursing home care at home or in an institution. PARTICIPANTS: N = 168 (81 IRR and 87 UC). Patients had to meet classification of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition for dementia, amnestic disorders, or other cognitive disorders. Further inclusion criteria: Neuropsychiatric Inventory (NPI) ≥3; Mini-Mental State Examination ≥18 and ≤27; and Barthel Index (BI) ≥5 and ≤19. INTERVENTION: IRR consisted of a person-oriented integrative psychotherapeutic nursing home program to reduce MNPS of the patient and CB. UC consisted of different types of nursing home care at home or in an institution, mostly emotion oriented. MEASUREMENTS: Primary outcome variable was MNPS (number and sum-severity of NPI). Furthermore, burden and competence of caregiver were also measured. ASSESSMENTS: T1 (inclusion), T2 (end of treatment), T3 (after 6 months of follow-up). Cohen's d (Cd) was calculated for mean differences (intention to treat). For confounding, repeated measurement modeling (random regression modeling [RRM]) was applied. RESULTS: In the short term from the perspective of the caregiver, IRR showed up to 34% surplus effects on MNPS of the patients; NPI symptoms: 1.31 lower (Cd, -0.53); and NPI sum- severity: 11.16 lower (Cd, -0.53). In follow-up, the effects were sustained. However, from the perspective of the nursing team, these effects were insignificant, although the trend was in the same direction and correlated significantly with the caregiver results over time (at T3: r = 0.48). In addition, IRR showed surplus effects (up to 36%) on burden and competence of caregiver: NPI emotional distress: 3.78 (Cd, -0.44); CB: 17.69 (Cd, -0.63) lower; and Competence: 6.26 (Cd, 0.61) higher. In follow-up, the effects increased up to 50%. RRM demonstrated that the effects were stable. CONCLUSION: From the perspective of the caregiver, IRR was significantly more effective than UC to reduce MNPS in cognitively impaired patients and CB. In follow-up, the effect on CB even increased. However, from the perspective of the nursing team, the effects on MNPS were statistically insignificant. Nevertheless, the trend was in the same direction and correlated significantly with the caregiver results over time. Further research is needed, preferably using a blinded randomized controlled trial.

Prognostic factors for a favourable long-term outcome from an integrative psychotherapeutic nursing home programme.

BACKGROUND/AIMS: The prevalence of multiple psychiatric symptoms (MPS) in psychogeriatric patients is about 80%. MPS have negative effects on caregivers; 70-80% of caregivers are moderately to heavily burdened. We tested an integrative psychotherapeutic programme (IRR) focused on MPS as well as caregiver burden. To develop decision rules in indicating IRR, prognostic potentialities of diagnostic and functional baseline variables for a favourable outcome of IRR were identified. METHODS: Patients with a DSM-IV classification of dementia, amnestic disorders or other cognitive disorders were followed in a randomised controlled trial, comparing IRR (n=81) with usual nursing home care (n=87). Assessments at T1 (intake) and T2 (6 months' follow-up). RESULTS: In the combined prognostic models Alzheimer dementia showed significant prognostic qualities for improvement on NPI sum severity (OR 3.01), IRR on general burden and competence of caregiver (OR 2.29 and 3.34). Cognitive functions had low prognostic value. CONCLUSION: Prognostic modelling of positive change on severity of MPS and caregiver burden was feasible. Applying three decision rules, all resulted in IRR as indicated intervention. It seems justified to refer psychogeriatric patients suffering from a broad range of cognitive function disorders, specifically patients with dementia of the Alzheimer type, to the IRR programme.

Multivariate models of subjective caregiver burden in dementia: a systematic review.

BACKGROUND: Burden in dementia caregivers is a complex and multidimensional construct. Several models of burden and other representations of burden like depression or mental health are described in literature. To clarify the state of science, we systematically reviewed complex models that include both patient and caregiver determinants of caregiver burden. OBJECTIVE: A review of determinant models of caregiver burden. DESIGN: Systematic review. DATA SOURCES: Electronic databases PubMed, PsycInfo and EMbase were searched in December 2013. STUDY SELECTION AND ANALYSIS: Research studies with quantitative outcome measures of caregiver burden or burden-related concepts, including both patient and caregiver functional characteristics as determinants. We categorized the determinant variables in the models and calculated the percentages of proven determinants within each category. RESULTS: We found 32 studies with burden models and 24 depression and mental health models. Patient behavioral problems, caregiver coping and personality traits and competence are most consistent determinants of caregiver burden, depression and mental health. Behavioral problems are more significant than cognitive disorders or lack of self-care. Of all measured caregiver personality traits, neuroticism has the strongest impact on caregiver burden. Regarding caregiver competences, feeling competent or enjoying higher self-efficacy in general diminish caregiver burden and promote caregiver mental health.