Sex-differences in the association of social health and marital status with blood-based immune and neurodegeneration markers in a cohort of community-dwelling older adults.

BACKGROUND: The immune system has been proposed to play a role in the link between social health and all-cause dementia risk. We explored cross-sectional and longitudinal associations between social health, immune system balance and plasma neurodegeneration markers in community-dwelling older adults, and explored whether the balance between innate and adaptive immunity mediates associations between social health and both cognition and total brain volume. METHODS: Social health markers (social support, marital status, loneliness) were measured in the Rotterdam Study between 2002-2008. Immune system cell counts and balance were assessed repeatedly from 2002 to 2016 using white blood-cell-based indices and individual counts (granulocyte-to-lymphocyte ratio (GLR), platelet-to-lymphocyte ratio (PLR), and systemic immune-inflammation index (SII)). Plasma neurodegeneration biomarkers (amyloid-ß40, amyloid-ß42, total tau and neurofilament light chain) were measured once from blood samples collected between 2002-2008. Global cognitive function and total brain volume (MRI) were measured at the follow-up visit between 2009-2014. We used linear mixed models to study longitudinal associations and performed causal mediation analyses. RESULTS: In 8374 adults (mean age 65.7, 57 % female), never married participants (n = 394) had higher GLR, PLR and SII compared to married peers at baseline and during follow-up, indicating imbalance towards innate immunity. Being never married was associated with higher plasma amyloid-ß40, and being widowed or divorced with higher plasma total tau levels at baseline. Widowed or divorced males, but not females, had higher GLR, PLR and SII at baseline. Higher social support was associated with lower PLR in females, but higher PLR in males. Loneliness was not associated with any of the immune system balance ratios. Never married males had higher levels of all plasma neurodegeneration markers at baseline. Immune system balance did not mediate associations between social health and cognition or total brain volume, but does interact with marital status. CONCLUSION: This study indicates that marital status is associated with blood-based immune system markers toward innate immunity and higher levels of plasma neurodegeneration markers. This is particularly evident for never married or previously married male older adults compared to married or female peers.

Social Health Is Associated With Tract-Specific Brain White Matter Microstructure in Community-Dwelling Older Adults.

Background: Poor social health has been linked to a risk of neuropsychiatric disorders. Neuroimaging studies have shown associations between social health and global white matter microstructural integrity. We aimed to identify which white matter tracts are involved in these associations. Methods: Social health markers (loneliness, perceived social support, and partnership status) and white matter microstructural integrity of 15 white matter tracts (identified with probabilistic tractography after diffusion magnetic resonance imaging) were collected for 3352 participants (mean age 58.4 years, 54.9% female) from 2002 to 2008 in the Rotterdam Study. Cross-sectional associations were studied using multivariable linear regression. Results: Loneliness was associated with higher mean diffusivity (MD) in the superior thalamic radiation and the parahippocampal part of the cingulum (standardized mean difference for both tracts: 0.21, 95% CI, 0.09 to 0.34). Better perceived social support was associated with lower MD in the forceps minor (standardized mean difference per point increase in social support: -0.06, 95% CI, -0.09 to -0.03), inferior fronto-occipital fasciculus, and uncinate fasciculus. In male participants, better perceived social support was associated with lower MD in the forceps minor, and not having a partner was associated with lower fractional anisotropy in the forceps minor. Loneliness was associated with higher MD in the superior thalamic radiation in female participants only. Conclusions: Social health was associated with tract-specific white matter microstructure. Loneliness was associated with lower integrity of limbic and sensorimotor tracts, whereas better perceived social support was associated with higher integrity of association and commissural tracts, indicating that social health domains involve distinct neural pathways of the brain.

Determinants of social health trajectories during the COVID-19 pandemic in older adults: the Rotterdam Study.

OBJECTIVES: The coronavirus disease-2019 (COVID-19) pandemic and accompanying lockdown restrictions impacted social life significantly. We studied associations of sociodemographic factors, mental and social health markers, and brain structure with social health trajectories during the COVID-19 pandemic. DESIGN: Prospective longitudinal population-based cohort study. SETTING: Community-dwelling inhabitants of Rotterdam, the Netherlands. PARTICIPANTS: Repeated questionnaires including questions on social health were sent to Rotterdam Study participants from April 2020 onwards. Social health data at study baseline were available for 5017 participants (mean age: 68.7 ± 11.3; 56.9% women). MEASUREMENTS: Determinants were assessed in routine Rotterdam Study follow-up (1990-2020), including global brain volumes in a subset of participants (N = 1720). We applied linear mixed models and generalized estimating equations to quantify associations between determinants and trajectories of loneliness, perceived social isolation and social connectedness over three time points from April 22nd to July 31st 2020. RESULTS: Loneliness prevalence was 27.9% in April 2020 versus 12.6% prepandemic. Social isolation (baseline mean 4.7 ± 2.4) and loneliness scores (baseline mean 4.9 ± 1.5) decreased over time, whereas social connectedness trajectories remained stable. Depressive symptoms, female sex, prepandemic loneliness, living alone, and not owning a pet were independently associated with lower social connectedness and higher social isolation and loneliness at COVID-19 baseline, but recovery of social health was similar for all determinants. Larger intracranial volume was associated with higher social connectedness. CONCLUSIONS: Despite baseline differences for specific determinants, older adults showed similar recovery of loneliness and social isolation alongside stable social connectedness over time during the pandemic. Social health is multidimensional, especially during a global health crisis.

Social Health Is Associated With Structural Brain Changes in Older Adults: The Rotterdam Study.

BACKGROUND: Social health markers have been linked to the development of dementia. We hypothesize that social health affects brain structure and consequently influences cognitive function. We aim to elucidate the cross-sectional and longitudinal associations between social health markers and structural brain changes in older adults in the general population. METHODS: Social health markers (loneliness, perceived social support, marital status) were assessed in the Rotterdam Study from 2002 to 2008. Magnetic resonance imaging of the brain was performed repeatedly between 2005 and 2015 for 3737 participants to obtain brain volumetrics, cerebral small vessel disease markers, and white matter microstructural integrity as measures of brain structure. Cross-sectional associations between social health and brain structure were studied using multivariable linear and logistic regression models. Longitudinal associations between baseline social health and changes in brain structure were examined using linear mixed models and generalized estimating equations. RESULTS: Loneliness was associated with smaller white matter volume at baseline (mean difference = -4.63 mL, 95% CI = -8.46 to -0.81). Better perceived social support was associated with larger total brain volume and gray matter volume at baseline and a less steep decrease in total brain volume over time. Better social support was associated with higher global fractional anisotropy and lower mean diffusivity at baseline. Participants who had never been married had a smaller total brain volume (mean difference = -8.27 mL, 95% CI = -13.16 to -3.39) at baseline than married peers. CONCLUSIONS: Social health is associated with brain structure. Better perceived social support at baseline was associated with better brain structure over time.

Decreased costs and retained QoL due to the 'PACE Steps to Success' intervention in LTCFs: cost-effectiveness analysis of a randomized controlled trial.

BACKGROUND: The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefore, the objective of this paper was to assess the cost-effectiveness of the 'PACE Steps to Success' intervention. PACE (Palliative Care for Older People) is a 1-year palliative care programme aiming at integrating general palliative care into day-to-day routines in LTCFs, throughout seven EU countries. METHODS: A cluster RCT was conducted. LTCFs were randomly assigned to intervention or usual care. LTCFs reported deaths of residents, about whom questionnaires were filled in retrospectively about resource use and quality of the last month of life. A health care perspective was adopted. Direct medical costs, QALYs based on the EQ-5D-5L and costs per quality increase measured with the QOD-LTC were outcome measures. RESULTS: Although outcomes on the EQ-5D-5L remained the same, a significant increase on the QOD-LTC (3.19 points, p value 0.00) and significant cost-savings were achieved in the intervention group (€983.28, p value 0.020). The cost reduction mainly resulted from decreased hospitalization-related costs (€919.51, p value 0.018). CONCLUSIONS: Costs decreased and QoL was retained due to the PACE Steps to Success intervention. Significant cost savings and improvement in quality of end of life (care) as measured with the QOD-LTC were achieved. A clinically relevant difference of almost 3 nights shorter hospitalizations in favour of the intervention group was found. This indicates that timely palliative care in the LTCF setting can prevent lengthy hospitalizations while retaining QoL. In line with earlier findings, we conclude that integrating general palliative care into daily routine in LTCFs can be cost-effective. TRIAL REGISTRATION: ISRCTN14741671 .

Correction: Technical-efficiency analysis of end-of-life care in long-term care facilities within Europe: A cross-sectional study of deceased residents in 6 EU countries (PACE).

[This corrects the article DOI: 10.1371/journal.pone.0204120.].

Technical-efficiency analysis of end-of-life care in long-term care facilities within Europe: A cross-sectional study of deceased residents in 6 EU countries (PACE).

BACKGROUND: An ageing population in the EU leads to a higher need of long-term institutional care at the end of life. At the same time, healthcare costs rise while resources remain limited. Consequently, an urgency to extend our knowledge on factors affecting efficiency of long-term care facilities (LTCFs) arises. This study aims to investigate and explain variation in technical efficiency of end-of-life care within and between LTCFs of six EU countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. In this study, technical efficiency reflects the LTCFs' ability to obtain maximal quality of life (QoL) and quality of dying (QoD) for residents from a given set of resource inputs (personnel and capacity). METHODS: Cross-sectional data were collected by means of questionnaires on deceased residents identified by LTCFs over a three-month period. An output-oriented data-envelopment analysis (DEA) was performed, producing efficiency scores, incorporating personnel and capacity as input and QoL and QoD as output. Scenario analysis was conducted. Regression analysis was performed on explanatory (country, LTCF type, ownership, availability of palliative care and opioids) and case mix (disease severity) variables. RESULTS: 133 LTCFs of only one type (onsite nurses and offsite GPs) were considered in order to reduce heterogeneity. Variation in LTCF efficiency was found across as well as within countries. This variation was not explained by country, ownership, availability of palliative care or opioids. However, in the 'hands-on care at the bedside' scenario, i.e. only taking into account nursing and care assistants as input, Poland (p = 0.00) and Finland (p = 0.04) seemed to be most efficient. CONCLUSIONS: Efficiency of LTCFs differed extensively across as well as within countries, indicating room for considerable efficiency improvement. Our findings should be interpreted cautiously, as comprehensive comparative EU-wide research is challenging as it is influenced by many factors.

Effectiveness of a nurse-supported self-management programme for dual sensory impaired older adults in long-term care: a cluster randomised controlled trial.

OBJECTIVE: To evaluate the effectiveness of a nurse-supported self-management programme to improve social participation of dual sensory impaired older adults in long-term care homes. DESIGN: Cluster randomised controlled trial. SETTING: Thirty long-term care homes across the Netherlands. PARTICIPANTS: Long-term care homes were randomised into intervention clusters (n=17) and control clusters (n=13), involving 89 dual sensory impaired older adults and 56 licensed practical nurses. INTERVENTION: Nurse-supported self-management programme. MEASUREMENTS: Effectiveness was evaluated by the primary outcome social participation using a participation scale adapted for visually impaired older adults distinguishing four domains: instrumental activities of daily living, social-cultural activities, high-physical-demand and low-physical-demand leisure activities. A questionnaire assessing hearing-related participation problems was added as supportive outcome. Secondary outcomes were autonomy, control, mood and quality of life and nurses' job satisfaction. For effectiveness analyses, linear mixed models were used. Sampling and intervention quality were analysed using descriptive statistics. RESULTS: Self-management did not affect all four domains of social participation; however. the domain 'instrumental activities of daily living' had a significant effect in favour of the intervention group (P=0.04; 95% CI 0.12 to 8.5). Sampling and intervention quality was adequate. CONCLUSIONS: A nurse-supported self-management programme was effective in empowering the dual sensory impaired older adults to address the domain 'instrumental activities of daily living', but no differences were found in addressing the other three participation domains. Self-management showed to be beneficial for managing practical problems, but not for those problems requiring behavioural adaptations of other persons. TRIAL REGISTRATION NUMBER: NCT01217502; Results.

Evaluation of nurses' changing perceptions when trained to implement a self-management programme for dual sensory impaired older adults in long-term care: a qualitative study.

OBJECTIVES: To gain insights into the process of nurses' changing perceptions when trained to implement a self-management programme for dual sensory impaired older adults in long-term care, and into the factors that contributed to these changes in their perceptions. DESIGN: Qualitative study alongside a cluster randomised controlled trial. SETTING: 17 long-term care homes spread across the Netherlands. PARTICIPANTS: 34 licensed practical nurses supporting 54 dual sensory impaired older adults. INTERVENTION: A 5-month training programme designed to enable nurses to support the self-management of dual sensory impaired older adults in long-term care. PRIMARY OUTCOMES: Nurses' perceptions on relevance and feasibility of the self-management programme collected from nurses' semistructured coaching diaries over the 5-month training and intervention period, as well as from trainers' reports. RESULTS: Nurses' initial negative perceptions on relevance and feasibility of the intervention changed to positive as nurses better understood the concept of autonomy. Through interactions with older adults and by self-evaluations of the effect of their behaviour, nurses discovered that their usual care conflicted with client autonomy. From that moment, nurses felt encouraged to adapt their behaviour to the older adults' autonomy needs. However, nurses' initial unfamiliarity with conversation techniques required a longer exploration period than planned. Once client autonomy was understood, nurses recommended expanding the intervention as a generic approach to all their clients, whether dual sensory impaired or not. CONCLUSIONS: Longitudinal data collection enabled exploration of nurses' changes in perceptions when moving towards self-management support. The training programme stimulated nurses to go beyond 'protocol thinking', discovering client autonomy and exploring the need for their own behavioural adaptations. Educational programmes for practical nurses should offer more longitudinal coaching of autonomy supportive conversational skills. Intervention programming should acknowledge that change is a process rather than an event, and should include self-evaluations of professional behaviours over a period of time. TRIAL REGISTRATION NUMBER: NCT01217502, Post-results.

Effectiveness of a training package for implementing a community-based occupational therapy program in dementia: a cluster randomized controlled trial.

OBJECTIVE: Evaluate the effectiveness of a training package to implement a community occupational therapy program for people with dementia and their caregiver (COTiD). DESIGN: Cluster randomized controlled trial. SUBJECTS: A total of 45 service units including 94 occupational therapists, 48 managers, 80 physicians, treating 71 client-caregiver couples. INTERVENTIONS: Control intervention: A postgraduate course for occupational therapists only. EXPERIMENTAL INTERVENTION: A training package including the usual postgraduate course, additional training days, outreach visits, regional meetings, and access to a reporting system for occupational therapists. Physicians and managers received newsletters, had access to a website, and were approached by telephone. PRIMARY OUTCOME: The intended adherence of therapists to the COTiD program. This was assessed using vignettes. SECONDARY OUTCOMES: clients' daily functioning, caregivers' sense of competence, quality of life, and self-perceived performance of daily activities of both clients and caregivers. Between-group differences were assessed using multilevel analyses with therapist and intervention factors as covariates. RESULTS: No significant between-group differences between baseline and 12 months were found for adherence (1.58, 95% CI -0.10 to 3.25), nor for any client or caregiver outcome. A higher number of coaching sessions and higher self-perceived knowledge of dementia at baseline positively correlated with adherence scores. In contrast, experiencing more support from occupational therapy colleagues or having conducted more COTiD treatments at baseline negatively affected adherence scores. CONCLUSION: The training package was not effective in increasing therapist adherence and client-caregiver outcomes. This study suggests that coaching sessions and increasing therapist knowledge on dementia positively affect adherence. CLINICAL TRIAL NUMBER: NCT01117285.

Effectiveness of rehabilitation interventions in improving emotional and functional status in hearing or visually impaired older adults: a systematic review with meta-analyses.

OBJECTIVE: To assess the effectiveness of non-equipment based rehabilitation interventions for older adults with an age-related hearing or visual impairment. DATA SOURCES: We searched PubMed, EMBASE, PsychInfo, CINAHL, and the Cochrane Central Register of Controlled Trials. REVIEW METHODS: Two authors independently assessed trial eligibility, extracted data and assessed methodological quality. Controlled studies with more than 80% of participants aged ≥ 55 years and with rehabilitation interventions either separately or in combination with technical device provision were included. Meta-analyses were undertaken for the primary outcomes: emotional status, functional status, self-efficacy and social participation. All studies were categorized into 3 subgroups of intervention approaches (cognitive restructuring, education, and problem-solving), and subgroup analysis was performed. RESULTS: Fourteen studies were identified: six on hearing impairment and eight on visual impairment, involving 1622 sensory impaired participants (mean age 70). Methodological quality of the studies was modest. Eight studies offered data for meta-analysis. No significant effects in favour of interventions on either emotional or functional status, self-efficacy, or social participation were found. In the subgroup analysis, only the problem-solving approach showed a positive effect on emotional status. CONCLUSIONS: This review found no effects of non-equipment based rehabilitation interventions on emotional and functional status, self-efficacy, and social participation. However, subgroup analysis showed problem-solving as a potential effective approach for positively affecting emotional status.

Pain is not systematically registered in Dutch medical oncology outpatients.

BACKGROUND: Systematic pain registration and assessment with a visual analog scale (VAS) or numeric rating scale (NRS) at each visit are key recommendations in one of the most recent guidelines on cancer pain management. It is unclear whether this recommendation is applied. OBJECTIVES: The aim was to explore registration of pain in medical records of patients visiting the medical oncology outpatient clinic. METHODS: In a multicenter study in six Dutch hospitals, data were extracted from medical records of 380 outpatients with cancer. Data of the first three visits at the outpatient clinic were studied. Descriptive statistics were conducted. RESULTS: In 23% of all 987 visits at the outpatient clinic, pain or absence of pain was registered, and in an additional 15%, a nonspecific symptom description was given. Regarding all other visits, (62%) pain or absence of pain was not documented at all. Pain measurement using a VAS or NRS was documented in only one visit. Pain was more often registered in medical records of patients with metastasis, as well as in those of patients with urogenital tumors. CONCLUSION: Pain in medical oncology outpatients is not systematically registered in their medical records. With one exception, pain was not registered with a VAS or NRS. Yet, registration and assessment of pain to monitor pain are essential to evaluate and adapt pain treatment over time. Pain registration has not improved since 2001 and therefore implementing the recommendations regarding systematic monitoring of pain is needed.

Screening for hearing, visual and dual sensory impairment in older adults using behavioural cues: a validation study.

OBJECTIVE: This study investigated the psychometric properties of the Severe Dual Sensory Loss screening tool, a tool designed to help nurses and care assistants to identify hearing, visual and dual sensory impairment in older adults. DESIGN: Construct validity of the Severe Dual Sensory Loss screening tool was evaluated using Crohnbach's alpha and factor analysis. Interrater reliability was calculated using Kappa statistics. To evaluate the predictive validity, sensitivity and specificity were calculated by comparison with the criterion standard assessment for hearing and vision. The criterion used for hearing impairment was a hearing loss of ≥40 decibel measured by pure-tone audiometry, and the criterion for visual impairment was a visual acuity of ≤0.3 diopter or a visual field of ≤0.3°. Feasibility was evaluated by the time needed to fill in the screening tool and the clarity of the instruction and items. Prevalence of dual sensory impairment was calculated. RESULTS: A total of 56 older adults receiving aged care and 12 of their nurses and care assistants participated in the study. Crohnbach's alpha was 0.81 for the hearing subscale and 0.84 for the visual subscale. Factor analysis showed two constructs for hearing and two for vision. Kappa was 0.71 for the hearing subscale and 0.74 for the visual subscale. The predictive validity showed a sensitivity of 0.71 and a specificity of 0.72 for the hearing subscale; and a sensitivity of 0.69 and a specificity of 0.78 for the visual subscale. The optimum cut-off point for each subscale was score 1. The nurses and care assistants reported that the Severe Dual Sensory Loss screening tool was easy to use. The prevalence of hearing and vision impairment was 55% and 29%, respectively, and that of dual sensory impairment was 20%. CONCLUSIONS: The Severe Dual Sensory Loss screening tool was compared with the criterion standards for hearing and visual impairment and was found a valid and reliable tool, enabling nurses and care assistants to identify hearing, visual and dual sensory impairment among older adults.

The economics of dementia-care mapping in nursing homes: a cluster-randomised controlled trial.

BACKGROUND: Dementia-care mapping (DCM) is a cyclic intervention aiming at reducing neuropsychiatric symptoms in people with dementia in nursing homes. Alongside an 18-month cluster-randomized controlled trial in which we studied the effectiveness of DCM on residents and staff outcomes, we investigated differences in costs of care between DCM and usual care in nursing homes. METHODS: Dementia special care units were randomly assigned to DCM or usual care. Nurses from the intervention care homes received DCM training, a DCM organizational briefing day and conducted the 4-months DCM-intervention twice during the study. A single DCM cycle consists of observation, feedback to the staff, and action plans for the residents. We measured costs related to health care consumption, falls and psychotropic drug use at the resident level and absenteeism at the staff level. Data were extracted from resident files and the nursing home records. Prizes were determined using the Dutch manual of health care cost and the cost prices delivered by a pharmacy and a nursing home. Total costs were evaluated by means of linear mixed-effect models for longitudinal data, with the unit as a random effect to correct for dependencies within units. RESULTS: 34 units from 11 nursing homes, including 318 residents and 376 nursing staff members participated in the cost analyses. Analyses showed no difference in total costs. However certain changes within costs could be noticed. The intervention group showed lower costs associated with outpatient hospital appointments over time (p = 0.05) than the control group. In both groups, the number of falls, costs associated with the elderly-care physician and nurse practitioner increased equally during the study (p<0.02). CONCLUSIONS: DCM is a cost-neutral intervention. It effectively reduces outpatient hospital appointments compared to usual care. Other considerations than costs, such as nursing homes' preferences, may determine whether they adopt the DCM method. TRIAL REGISTRATION: Dutch Trials Registry NTR2314.

The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study.

BACKGROUND: Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning. We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms. METHODS: A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers' report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models. RESULTS: Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms. CONCLUSIONS: Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary.

The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study.

BACKGROUND: Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs. METHODS: Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes. RESULTS: The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services. CONCLUSION: In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.

Unmet needs and health-related quality of life in young-onset dementia.

OBJECTIVES: Young-onset dementia (YOD) causes specific challenges and issues that are likely to affect health-related quality of life (HRQOL). This study explored patient and caregiver HRQOL and its association with unmet needs in YOD. METHODS: A cross-sectional design was used to study 215 community-dwelling YOD patients and their primary caregivers. Multiple linear regression analyses were performed to determine the relationship between unmet needs assessed with the Camberwell Assessment of Need for the Elderly scale and patient and caregiver HRQOL, controlling for other variables such as demographic characteristics, patient functional status, neuropsychiatric symptoms, and caregiver sense of competence. RESULTS: Patient HRQOL was not associated with unmet needs. However, we found that the unmet needs of both patient and caregiver were related to several domains of caregiver HRQOL. CONCLUSIONS: This study shows that patient and caregiver unmet needs are related to caregiver HRQOL in YOD. However, the relationship between HRQOL and unmet needs is complex. The assessment of unmet needs within the context of HRQOL seems to be an important prerequisite for personalizing care in YOD. Adjusting supportive services to match the individual needs and preferences of these young patients and their caregivers is likely to enhance their quality of life.

Long-term effects of group therapy for patients with mild cognitive impairment and their significant others: a 6- to 8-month follow-up study.

The present study examines the long-term effects of a 10-session cognitive behavioural group therapy for patients with mild cognitive impairment (MCI) and their significant others 6 to 8 months after completion of the intervention. Forty-seven MCI patients and 47 significant others participated in the follow-up assessment. Results of the RAND-36, Illness Cognition Questionnaire, IQCODE, GDS-15 and Sense of Competence Questionnaire at follow-up were compared with the post-intervention assessment. Our findings showed that the increased level of acceptance in the MCI patients was maintained at follow-up, with an increased insight into their cognitive decline compared with post-intervention assessment (p < 0.001). In both the patients and the significant others, helplessness and wellbeing were worse at follow up (p < 0.05), but sense of competence increased in the significant others (p < 0.05). These results indicate a need for extension of the support after completion of the program, for example by providing regular booster sessions.

Determinants for the effectiveness of implementing an occupational therapy intervention in routine dementia care.

BACKGROUND: A multifaceted implementation (MFI) strategy was used to implement an evidence-based occupational therapy program for people with dementia (COTiD program). This strategy was successful in increasing the number of referrals, but not in improving occupational therapists' (OTs) adherence. Therefore, a process evaluation was conducted to identify factors that influenced the effectiveness of the MFI strategy. METHODS: A mixed-method approach of qualitative and quantitative research was used to evaluate the implementation process. The MFI strategy as planned and as executed were reported and evaluated based on the framework of Hulscher et al. (2003; 2006). Data on OTs attitudes and expected barriers were collected at baseline from 94 OTs using a 19-item questionnaire. Data on the experiences were collected after finishing the implementation using focus groups with OTs and telephone interviews with physicians and managers. For quantitative data, frequencies and correlations were calculated and qualitative data were analyzed using inductive content analysis. RESULTS: The implementation strategy as executed had a stronger focus than planned on increasing OTs promotional skills due to an initial lack of referrals. This resulted in less attention for increasing OTs' skills in using the COTiD program as initially intended. At baseline, OTs had a positive attitude toward the program, however, 75% did not feel experienced enough and only 14.3% felt competent in using the program. Focus groups and interviews revealed various determinants that influenced implementation. Most managers were positive about the program. However, the degree of operational support of managers for OTs regarding the implementation was not always adequate. Managers stated that a well-defined place for occupational therapy within the dementia care network was lacking although this was perceived necessary for successful implementation. Several physicians perceived psychosocial interventions not to be in their area of expertise or not their responsibility. All professionals perceived inter-professional collaboration to be a facilitator for effective implementation, and general practitioners were perceived as key partners in this collaboration. However, collaboration was not always optimal. OTs indicated that increasing the referral rate was most effective when promoting OT via other disciplines within a physician's network. CONCLUSION: Our data suggests that a first step in successful implementation should be to make sure that individual and organizational barriers are resolved. In addition, implementation should be network-based and encourage inter-professional collaboration. Initial promotion of COTiD should focus on physicians that have a positive attitude toward non-pharmacological interventions.

Effectiveness of a self-management program for dual sensory impaired seniors in aged care settings: study protocol for a cluster randomized controlled trial.

BACKGROUND: Five to 25 percent of residents in aged care settings have a combined hearing and visual sensory impairment. Usual care is generally restricted to single sensory impairment, neglecting the consequences of dual sensory impairment on social participation and autonomy. The aim of this study is to evaluate the effectiveness of a self-management program for seniors who acquired dual sensory impairment at old age. METHODS/DESIGN: In a cluster randomized, single-blind controlled trial, with aged care settings as the unit of randomization, the effectiveness of a self-management program will be compared to usual care. A minimum of 14 and maximum of 20 settings will be randomized to either the intervention cluster or the control cluster, aiming to include a total of 132 seniors with dual sensory impairment. Each senior will be linked to a licensed practical nurse working at the setting. During a five to six month intervention period, nurses at the intervention clusters will be trained in a self-management program to support and empower seniors to use self-management strategies. In two separate diaries, nurses keep track of the interviews with the seniors and their reflections on their own learning process. Nurses of the control clusters offer care as usual. At senior level, the primary outcome is the social participation of the seniors measured using the Hearing Handicap Questionnaire and the Activity Card Sort, and secondary outcomes are mood, autonomy and quality of life. At nurse level, the outcome is job satisfaction. Effectiveness will be evaluated using linear mixed model analysis. DISCUSSION: The results of this study will provide evidence for the effectiveness of the Self-Management Program for seniors with dual sensory impairment living in aged care settings. The findings are expected to contribute to the knowledge on the program's potential to enhance social participation and autonomy of the seniors, as well as increasing the job satisfaction of the licensed practical nurses. Furthermore, an extensive process evaluation will take place which will offer insight in the quality and feasibility of the sampling and intervention process. If it is shown to be effective and feasible, this Self-Management Program could be widely disseminated. CLINICAL TRIALS REGISTRATION: ClinicalTrials.gov, NCT01217502.