Raymond Theodorus Catherina Maria Koopmans

Due to a global aging population, the prevalence of multimorbidity is increasing, including the co-occurrence of long-term physical and mental health conditions (Skou et al., 2022). Additionally, t...

Background: People living with dementia can develop resistive behavior during eating and drinking, complicating food and fluid intake. Objective: This study aimed to explore how relatives and healthcare professionals navigate care decisions, and to identify possible ethical dilemmas related to decision making and the impact on all involved. Methods: A qualitative multiple case study was conducted, nested in a prospective study. We identified cases where resistive behavior was observed in a person with dementia. We aimed at interviewing at least one relative and three healthcare professionals closely involved with a specific case. The interviews were transcribed verbatim and analyzed thematically. Results: A total of sixteen cases were eligible, of which five cases were included. Four cases concerned people residing in a nursing home, and one person was living at home. Three themes were identified from a total of sixteen interviews: 1) fundamental tension between autonomy and adequate nutrition, 2) understanding the person with dementia and the resistive behavior, and 3) solutions: searching for a personalized approach. This study contributes to the understanding of decision making in situations involving resistive behavior that adversely affects the intake of food and fluids. Conclusions: The findings emphasize the importance of a personalized approach that balances autonomy, quality of life, and adequate nutrition to provide the best care for people with dementia. The perspectives elicited in this study can help multidisciplinary teams to navigate this complex decision-making process.

People with dementia can develop resistive behavior that adversely affects the intake of food and fluids. This behavior, including (non-)verbal refusal, such as pushing away cutlery or an assisting person, can lead to malnutrition, dehydration, and increases mortality risk. However, it is unclear how common this behavior is in residents with young-onset dementia (YOD; symptoms under age 65) and how it compares to late-onset dementia (LOD). This study investigated the incidence and characteristics of these behaviors. We conducted a prospective cohort study with a twelve-month follow-up period, including thirty-six care units comprising 424 beds in twelve nursing homes across the Netherlands. Monthly registration of the total number of residents at risk informed the denominator, and the numerator was determined by the number of incident cases. Of forty reported cases, sixteen were incident, resulting in an incidence rate of 32/1000 person-years. The incidence rate was higher in residents with YOD (45/1000 person-years) than in LOD (26/1000 person-years). In all cases, at least two symptoms were observed. In fourteen of sixteen cases there was a prioritized global care goal aimed at providing comfort care and accept persisting resistive behavior. The findings might imply that young residents are at greater risk of developing these behaviors, and professional and informal caregivers should be prepared for the occurrence of specific resistive behaviors in younger residents.

Medical complications occur frequently in MCS and influence advance medical decision-making. This study aimed to report on medical complications and advance medical decision-making in a nationwide group of MCS patients. In this descriptive cross-sectional study, clinical and advance medical decision-making characteristics were collected in a survey, completed by the treating physician. The MCS population consisted of 32 patients: 65.6% traumatic etiology, 68.8% male. Patients had a median of five complications: hypertonia/spasticity (81.3%) and pneumonia (50.0%) occurred most frequently. Most patients had curative goals: three patients had a fully curative treatment scenarios, 29 a curative scenario with ≥ 1 treatment restrictions, two a palliative and two a symptomatic scenario. Conversations about advance medical decision-making were complicated by disputes with next of kin, inability to evaluate medical treatment because of medical instability, next of kin not being ready to discuss medical treatment, or a treatment scenario explicitly based on requests of next of kin. Medical complications are common in MCS patients and advance medical decision making was complicated. This legitimates realization of specialized care across acute, post-acute and long-term care. Further longitudinal research into advance medical decision-making is recommended.

Objectives: We investigated the 2-week prevalence and correlates of very frequent physical aggression (PA) and vocalizations in nursing home (NH)-residents with dementia. Method/Design: This cross-sectional study used combined data of 2074 NH-residents from four studies, collected from 119 dementia special care units in 26 Dutch NH. Very frequent PA was defined as scoring 6 or 7 on the items ‘hitting’, pushing’, ‘biting’ and ‘kicking’ of the Cohen Mansfield Agitation Inventory; very frequent vocalizations as scoring 6 or 7 on ‘screaming’ and ‘making strange noises’. We compared NH-residents with very frequent PA or vocalizations with residents with less frequent PA or vocalizations, assessing correlates using univariate and multivariate multilevel logistic regression analyses. Results: We found a 2-week prevalence of 2.2% (95% confidence interval (CI): 1.63–2.89) of very frequent PA and 11.5% of very frequent vocalizations (95% CI: 10.23–12.98). Very frequent PA was only associated with apathy (odds ratio (OR)=1.93, 95% CI: 1.04–3.61). Correlates of very frequent vocalizations were age (OR = 0.97, 95% CI: 0.951–0.998), dementia severity (overall p-value 0.020), antipsychotic drug use (OR = 1.56, 95% CI: 1.08–2.26), antiepileptic drug use (OR = 2.75, 95% CI: 1.34–5.68) and euphoria (OR = 2.01, 95% CI: 1.22–3.31). Conclusion: Characteristics of NH-residents with very frequent PA or very frequent vocalizations differ from those of NH-residents with less frequent PA or vocalizations. Frontal lobe damage, boredom, pain and/or external factors may explain several of the found associations, but further research is necessary. Our findings may contribute to better care for these residents and thereby to improving their quality of life.

Objective: Aging societies will bring an increase in the number of long-term care patients with mental-physical multimorbidity (MPM). This paper aimed to describe the natural course of neuropsychiatric symptoms (NPS) in patients with MPM in the first 8 months after admission to a geronto-psychiatric nursing home (GP-NH) unit. Methods: Longitudinal cohort study among 63 patients with MPM no dementia living in 17 GP-NH units across the Netherlands. Data collection consisted of chart review, semi-structured interviews, and brief neuropsychological testing, among which our primary outcome measure the Neuropsychiatric Inventory (NPI). Descriptive and bivariate analyses were conducted. Results: Our study showed a significant increase of the NPI total score (from 25.3 to 29.3, p = 0.045), and the total scores of a NPI hyperactivity cluster (from 9.7 to 11.8, p = 0.039), and a NPI mood/apathy cluster (from 7.7 to 10.1, p = 0.008). Just over 95% had any clinically relevant symptom at baseline and/or six months later, of which irritability was the most prevalent and persistent symptom and the symptom with the highest incidence. Hyperactivity was the most prevalent and persistent symptom cluster. Also, depression had a high persistence. Conclusions: Our results indicate the omnipresence of NPS of which most were found to be persistent. Therefore, we recommend to explore opportunities to reduce NPS in NH patients with MPM, such as creating a therapeutic milieu, educating the staff, and evaluating patient’s psychotropic drug use.

Background: This study is part of the Research to Assess Policies and Strategies for Dementia in the Young project. Information about specific needs in young onset dementia (YOD) will provide the basis for the development of an e‐health intervention to assist caregivers in coping with YOD in several European countries.Objective: The aim was to investigate the issues caregivers of people with YOD face.Methods: A qualitative content analysis method was used to analyse interviews with YOD caregivers. Quantitative data of the Needs in Young Onset Dementia study were used to select caregivers based on a ranking of unmet needs, to capture differences and similarities between caregivers that experienced high levels of unmet needs versus those with low levels of unmet needs. Needs were assessed with the Camberwell Assessment of Needs in the Elderly.Results: Findings revealed the following themes: (i) acceptance; (ii) perception of the relationship; (iii) role adaptation; (iv) Availability of appropriate services; (v) social support; and (vi) awareness in the person with dementia and acceptance of help. Several factors seemed more apparent in the caregivers who experienced few unmet needs opposed to the caregivers who experienced more unmet needs.Conclusion: The current study provides an in‐depth perspective on the caregiver's experiences and emphasizes specific themes that could be addressed in future interventions. This might contribute to a caring situation in which the caregiver experiences less unmet needs. Copyright © 2017 John Wiley & Sons, Ltd.