Background: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population... Show moreBackground: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. Aim: This study aimed to evaluate the model of 'Hospice Enabled Dementia Partnership' mapped to international domains of best practice. Design: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. Setting/Participants: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care. Results: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data 'Impact of Dementia', 'Value of the Service', 'Information and Learning Needs' and 'Working in Partnership'. Conclusions: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally. Show less
Westrhenen, A. van; Wijnen, B.M.; Thijs, R.D. 2022
Objective: Previous studies identified essential user preferences for seizure detection devices (SDDs), without addressing their relative strength. We performed a discrete choice experiment (DCE)... Show moreObjective: Previous studies identified essential user preferences for seizure detection devices (SDDs), without addressing their relative strength. We performed a discrete choice experiment (DCE) to quantify attributes' strength, and to identify the determinants of user SDD preferences. Methods: We designed an online questionnaire targeting parents of children with epilepsy to define the optimal balance between SDD sensitivity and positive predictive value (PPV) while accounting for individual seizure frequency. We selected five DCE attributes from a recent study. Using a Bayesian design, we constructed 11 unique choice tasks and analyzed these using a mixed multinomial logit model. Results: One hundred parents responded to the online questionnaire link; 49 completed all tasks, whereas 28 completed the questions, but not the DCE. Most parents preferred a relatively high sensitivity (80%-90%) over a high PPV (>50%). The preferred sensitivity-to-PPV ratio correlated with seizure frequency (r = -.32), with a preference for relative high sensitivity and low PPV among those with relative low seizure frequency (p = .04). All DCE attributes significantly impacted parental choices. Parents expressed preferences for consulting a neurologist before device use, personally training the device's algorithm, interaction with their child via audio and video, alarms for all seizure types, and an interface detailing measurements during an alarm. Preferences varied between subgroups (learning disability or not, SDD experience, relative low vs. high seizure frequency based on the population median). Significance: Various attributes impact parental SDD preferences and may explain why preferences vary among users. Tailored approaches may help to meet the contrasting needs among SDD users. Show less
Birkenhager-Gillesse, E.G.; Achterberg, W.P.; Janus, S.I.M.; Zuidema, S.U.; Hout, W.B. van den 2022
Introduction: We evaluated the cost-effectiveness of the "More at Home with Dementia" intervention, a multicomponent training program for co-residing caregivers of people with dementia (PwDs).... Show moreIntroduction: We evaluated the cost-effectiveness of the "More at Home with Dementia" intervention, a multicomponent training program for co-residing caregivers of people with dementia (PwDs). Methods: We performed a two-armed randomized controlled trial with an intervention and a control group. Participants were community-dwelling caregivers living with a person with dementia (59 randomized to intervention and 50 to control arm). The training program lasted 5 days and took place in a holiday accommodation. Quality-adjusted life-years (QALYs) were calculated using the EuroQol-5 Dimensions 3 Levels (EQ-5D-3L) for caregivers and PwDs. Costs for informal and formal social care, as well as health care, were collected at four times over a 6-month period from baseline. Information on nursing home admission or death was collected for 2 years after baseline. Results: QALYs for caregivers and PwDs added together were 0.12 higher in the intervention group compared with the control group (P = .11). After 1 year, there tended to be fewer nursing home admissions in the intervention group, but this difference was lost by 2 years (P = .19). The cost of the intervention was estimated at euro1000 (USD 1090) per dyad. Compared with the control group, the intervention group used other health care and formal social care significantly less for a year after baseline (P = .02 and .001, respectively). The estimated decrease in total costs was euro10,437 (P = .07), with an estimated 96% probability that the intervention was cost-effective vs usual care. Discussion: The multicomponent "More at Home with Dementia" training program is effective and appears to save costs compared with usual care. Savings appear to be achieved by delaying nursing home admissions and by reducing the use of other care resources. Further research is also needed to clarify if this intervention is effective for caregivers who do not live with a PwD, such as adult children, and for the caregivers of patients with other debilitating chronic diseases. At the same time, effort is advised to implement caregiver training in standard care programs. Show less
Smaling, H.J.A.; Joling, K.J.; Achterberg, W.P.; Francke, A.L.; Steen, J.T. van der 2021
Aim To compare the Positive Experiences Scale (PES), Gain in Alzheimer Care INstrument (GAIN) and Positive Aspects of Caregiving (PAC) in assessing positive caregiving experiences among caregivers... Show moreAim To compare the Positive Experiences Scale (PES), Gain in Alzheimer Care INstrument (GAIN) and Positive Aspects of Caregiving (PAC) in assessing positive caregiving experiences among caregivers of nursing home residents with dementia, and to explore which caregiver and care recipient characteristics relate to positive caregiving experiences.Methods A total of 63 caregivers (mean age 59.2 years; SD 11.8) of nursing home residents with dementia from four Dutch nursing homes participated in this cross-sectional observational study. Internal consistency, convergent validity and user-friendliness (i.e. perception of item relevance and comprehensibility, ease of use, missing items, and user preference) were examined using Cronbach's alpha's, correlation coefficients and descriptive statistics, respectively.Results The Cronbach's alpha for the GAIN, PAC and PES was 0.90, 0.94 and 0.68, respectively. The sum score of the PES showed a ceiling effect. Convergent validity was confirmed for all three instruments. The PES had the least missing data (mean number of missing items 0.2, SD 0.5) and was preferred by 40% of the caregivers, followed by the GAIN (mean number of missing items 0.6, SD 1.7, preferred by 11%). Positive caregiving experiences were negatively associated with educational level (range -0.28 to -0.35). Only the PES correlated positively with caregiver age (r = 0.25).Conclusions All three questionnaires can be used to assess positive caregiving experiences, but the GAIN might be the most suitable questionnaire for caregivers of nursing home residents with dementia. Further research is necessary to examine generalizability of the findings. Geriatr Gerontol Int 2021; center dot center dot: center dot center dot-center dot center dot. Show less
Iotova, V.; Schalin-Jantti, C.; Bruegmann, P.; Broesamle, M.; Graaf, J. de; Bratina, N.; ... ; Hiort, O. 2021
Aim To perform a baseline survey on condition-specific information access among patients/parents/caregivers with rare endocrine disorders (RD) in Europe. Methods Electronic invitation to... Show moreAim To perform a baseline survey on condition-specific information access among patients/parents/caregivers with rare endocrine disorders (RD) in Europe. Methods Electronic invitation to participate in a survey (19 questions) was sent to 120 patient advocacy groups (PAGs), and further distributed to 32 European countries. Results A total of 1138 respondents from 22 countries (74% women), aged between 1 year (parents) and 70 years, participated. The Netherlands, France, Germany, Italy and France had highest participation rates. All Main Thematic Groups (MTGs) were represented; the adrenal (32%), pituitary (26%) and thyroid (22%) were the most common. The majority of the respondents got information from their endocrinologist (75%), PAGs (37%) and expert reference centre (22%); 95% received information in their mother tongue. Leaflets (70%), infographics (65%), webinars (60%) and Internet films (55%) were preferred ways of learning. Respondents relied mostly on materials by PAGs and alliances (79%), rather than from specific international RD sites (15%). Fifty-six percent used Facebook, and 37% other social media, with a significant age difference (40 years) among non-users, 19% vs. 36%, p < 0.0001. Of all, 685 answered questions on informational materials for children-79% wanted materials that can be used by the children themselves. There was significant age difference (40 years) in the willingness to help create new educational materials; 49% vs. 34%, p < 0.001. Conclusions Our current patient information access survey provides a sound basis for further planning and execution of educational and teaching activities by Endo-ERN. Show less
Background: Falls are common in Huntington's disease (HD), which can have serious consequences and may therefore lead to fear of falling (FoF). There is little knowledge about falls or FoF in... Show moreBackground: Falls are common in Huntington's disease (HD), which can have serious consequences and may therefore lead to fear of falling (FoF). There is little knowledge about falls or FoF in individuals with HD or about formal and informal caregivers' fear about falls in individuals with HD.Objective: To explore prevalence of falls, FoF and fall preventive measures both those applied and those not included in managing falls in individuals with HD and their formal and informal caregivers, and to identify the relationship between FoF and, anxiety, awareness and cognitive functioning respectively.Methods: In a multi-center observational cross-sectional study, care-independent and -dependent individuals with HD and their formal and informal caregivers were recruited from six Dutch nursing homes specialized in HD. The participants were assessed by means of questionnaires enquiring about falls, FoF, awareness of fall risk, cognition, anxiety and fall preventive measures.Results: For all included 158 individuals with HD, the fall prevalence over the last 30 days was 28.8%. The prevalence of FoF in individuals with HD, formal caregivers and informal caregivers was 47.6%, 25.6%, and 63.5%, respectively, for care-independent individuals with HD and 46.9%, 26.3%, and 62.0%, respectively, for care-dependent individuals with HD. Anticipatory awareness of fall risks and gender are predictors of FoF in care-independent individuals with HD, though not in the care-dependent group. A combination of fall preventive measures is used in most individuals with HD.Conclusion: Fall prevalence is high and FoF is common in individuals with HD and their caregivers. Gender and anticipatory awareness are risk factors for FoF. In addition to the use of individual multifactorial fall prevention strategies, it is important to support both formal and informal caregivers in coping with falls. Show less
Oosterloo, M.; Bijlsma, E.K.; Die-Smulders, C. de; Roos, R.A.C. 2020
Objective: To investigate the reasons for the diagnostic delay of juvenile Huntington's disease patients in the Netherlands. Methods: This study uses interpretative phenomenological analysis.... Show moreObjective: To investigate the reasons for the diagnostic delay of juvenile Huntington's disease patients in the Netherlands. Methods: This study uses interpretative phenomenological analysis. Eligible participants were parents and caregivers of juvenile Huntington's disease patients. Results: Eight parents were interviewed, who consulted up to four health care professionals. The diagnostic process lasted three to ten years. Parents believe that careful listening and follow-up would have improved the diagnostic process. Although they believe an earlier diagnosis would have benefited their child's wellbeing, they felt they would not have been able to cope with more grief at that time. Conclusion: The delay in diagnosis is caused by the lack of knowledge among health care professionals on the one hand, and the resistance of the parent on the other. For professionals, the advice is to personalize their advice in which a conscious doctor's delay is acceptable or even useful. Show less
People with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of... Show morePeople with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of partners of people with pituitary disease (Cushing's disease, non-functioning adenoma, acromegaly, prolactinoma) were conducted. Partners mentioned worries related to the pituitary disease and negative beliefs about medication, coping challenges, relationship issues, social issues and unmet needs regarding care. This study emphasizes the importance of not only paying attention to psychosocial well-being of people with pituitary disease but also to their partners. Show less
Boogaard, J.A.; Werner, P.; Zisberg, A.; Steen, J.T. van der 2017
