Sterven met dementie

Steeds meer mensen zijn bij overlijden dement. Toch is er tot voor kort nauwelijks onderzoek gedaan naar sterven met dementie en de zorg rondom het levenseinde. In dit overzichtsartikel wordt een stand van zaken gegeven over onderzoek op dit gebied. Er zijn vijf deelgebieden te onderscheiden: prognose, besluitvorming, behandelingen, gezondheidstoestand / lijden van de patiënt, en de situatie van de familie en diens tevredenheid met de zorg. Het meeste onderzoek vond plaats in Amerika, in verpleeghuizen. Er zijn risicoscores voor overlijden binnen een half of één jaar ontwikkeld, en in diverse settings is kwalitatief onderzoek naar besluitvorming uitgevoerd. De laatste drie gebieden zijn voornamelijk in kaart gebracht door een serie kleine, retrospectieve onderzoeken. Twee lopende prospectieve onderzoeken bij verpleeghuispatiënten volgen besluitvorming en gaan niet alleen in op de mate van lijden van de patiënt en (on)tevredenheid van familie bij het levenseinde, maar bovenal op associaties met lijden en (on)tevredenheid. Dit zijn het CASCADE project in Boston en omgeving en het Nederlandse onderzoek 'Zorg bij Dementie'. Deze onderzoeken moeten het mogelijk maken om inzicht te krijgen in de meest geschikte interventies om zorg rondom het levenseinde van patiënten met dementie in de betreffende landen en elders te verbeteren

Een handreiking voor familieleden over palliatieve zorg bij dementie: evaluatie door zorgverleners en familieleden.

De familie van verpleeghuisbewoners met dementie is meestal betrokken bij de zorg en bij behandelbeslissingen over de bewoner. Hiertoe dienen familieleden geïnformeerd te zijn over het beloop van dementie en mogelijkheden tot palliatieve zorg. Op basis van een Canadese brochure ontwikkelden wij een handreiking met schriftelijke informatie toegesneden op de Nederlandse situatie. Deze handreiking en mogelijke toepassing werden beoordeeld door specialisten ouderengeneeskunde (n = 30), verzorging/verpleging (n = 38), en familieleden (n = 59) na het overlijden van de bewoner. Alle respondenten gaven aan dat er grote behoefte bestaat aan een dergelijke handreiking. De meeste familieleden (93%) hadden de handreiking eerder willen hebben. De verzorging/verpleging dacht vergeleken met specialisten oudergeneeskunde vaker dat de handreiking nuttig zou zijn voor alle of veel families (p = 0,04). De acceptatie van de handreiking onder de respondenten, gemeten op een schaal met 8 stellingen, was het grootst onder familieleden en het kleinst onder specialisten ouderengeneeskunde. Veel respondenten beoordeelden het nut positief (gemiddeld 7,9 tot 8,3 op een schaal van 0-10; SD 0,9 tot 1,4) en het nut verschilde niet tussen de respondentgroepen (p = 0,29). Alle respondenten zagen een rol voor zorgverleners in het overhandigen van de handreiking. Daarnaast vond de helft van de respondenten (53%; geen significant verschil tussen de groepen) dat de handreiking ook zonder tussenkomst van zorgverleners beschikbaar moet zijn; soms zelfs al vóór opname. Concluderend is er grote behoefte aan schriftelijke uitleg over palliatieve zorg bij dementie. De handreiking wordt geschikt gevonden. Een op punten aangepaste versie kan mogelijk zorgverleners en familie in de praktijk ondersteunen

Selection bias in family reports on end of life with dementia in nursing homes

Background: Selective participation in retrospective studies of families recruited after the patient's death may threaten generalizability of reports on end-of-life experiences. Objectives: To assess possible selection bias in retrospective study of dementia at the end of life using family reports. Methods: Two physician teams covering six nursing home facilities in the Netherlands reported on 117 of 119 consecutive decedents within two weeks after death unaware of after-death family participation in the study. They reported on characteristics; treatment and care; overall patient outcomes such as comfort, nursing care, and outcomes; and their own perspectives on the experience. We compared results between decedents with and without family participation. Results: The family response rate was 55%. There were no significant differences based on participation versus nonparticipation in demographics and other nursing home resident characteristics, treatment and care, or overall resident outcome. However, among participating families, physicians perceived higher-quality aspects of nursing care and outcome, better consensus between staff and family on treatment, and a more peaceful death. Participation was less likely with involvement of a new family member in the last month. Conclusions: Families may be more likely to participate in research with more harmonious teamwork in end-of-life caregiving. Where family participation is an enrollment criterion, comparing demographics alone may not capture possible selection bias, especially in more subjective measures. Selection bias toward more positive experiences, which may include the physician's and probably also the family's experiences, should be considered if representativeness is aimed for. Future work should address selection bias in other palliative settings and countries, and with prospective recruitment

Spiritual Care in a Hospital Setting: Nurses’ and Patients’ Perspectives

The Trent Universities Interprofessional Learning in Practice (TUILIP) project aimed to establish interprofessional learning (IPL) for healthcare students in clinical practice settings. Ten IPL facilitators were employed in eight varied practice setting pilot sites for up to a year to research, develop and run locally appropriate, sustainable IPL initiatives. Following the pilot phase, a qualitative evaluation was conducted in each site by means of interviews or focus groups with all key stakeholders (facilitators, clinical managers, practitioners, students, service users, carers). Data collection was guided by Kirkpatrick’s evaluation framework (1996), which focuses upon participant reactions, and their perceptions of learning, behaviour change and sustainable impact. In keeping with this framework, participants were asked to discuss their experiences of TUILIP in their placement setting (including its facilitation), and their opinions about its impact and success in terms of learning, behaviour change and sustainability. We report a subset of evaluation results relating to the roles of the facilitator, facilitation processes, experiences and challenges, personal and professional impact upon facilitators, and implications for IPL projects in practice. Facilitation tasks included preparing the ground, earning credibility, gathering ideas, researching feasibility, developing initiatives, involving service users, trialling and embedding initiatives. Facilitators were faced with challenges such as getting a focus, time limitations and dealing with logistics. They reported highs (being a fly on the wall, protected time, their educational role, and a sense of satisfaction) and lows (loneliness, frustration and fear of failure), but considered they had developed personally and professionally as a result of their experiences. Results demonstrated the complexity and demands of establishing and facilitating IPL initiatives in practice settings. Facilitation was time-consuming and effortful and did not always achieve its aims, but was a source of satisfaction and personal development. These findings suggest higher education institutions and practice settings should consider carefully the selection, preparation and support for facilitators of practice-based IPL, as well as how to engage local practitioners and service users, and embed changes in the clinical setting

Measuring pain in aphasia: validity and reliability of the PACSLAC-D

Background: Post-stroke pain in patients with an inability to communicate is not systematically assessed and therefore not sufficiently treated. This stresses the need to study pain assessment instruments that do not require good communication skills. Aim: To examine the validity and reliability of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D) in stroke patients with aphasia. Method: Sixty stroke patients (mean age 79.3 years, standard deviation [SD] 8.0), of whom 27 had aphasia were observed during rest, activities of daily living (ADL), and physiotherapy using the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D). The observations were repeated after two weeks. To examine convergent validity, correlations between the PACSLAC-D, self-report pain scales, and the clinical judgment of a health care professional (pain present yes/no) were used. To examine discriminative validity, differences in pain were investigated between rest and ADL, in patients who use pain medication and those who do not, and in patients with and without aphasia. Internal consistency and test-retest reliability were assessed to determine reliability. Results: Convergent validity failed to meet the acceptable threshold during rest but was adequate during ADL and physiotherapy. Discriminative validity was only adequate during ADL. The internal consistency was 0.33 during rest, 0.71 during ADL, and 0.65 during physiotherapy. Test-retest reliability varied from poor during rest (intraclass correlation coefficient [ICC] = 0.07; 95% confidence interval [CI]: -0.40-0.51) to excellent during physiotherapy (ICC = 0.95; 95% CI: 0.83-0.98). Conclusions: The PACSLAC-D captures pain in patients with aphasia who are unable to self-report, during ADL and physiotherapy, but may be less accurate during rest. & COPY; 2023 Published by Elsevier Inc. on behalf of American Society for Pain Management Nursing.Geriatrics in primary carePublic Health and primary car

Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

Geriatrics in primary car

Symptoms and treatment when death is expected in dementia patients in long-term care facilities

Geriatrics in primary car

Measuring positive caregiving experiences in family caregivers of nursing home residents: a comparison of the Positive Experiences Scale, Gain in Alzheimer Care INstrument, and Positive Aspects of Caregiving questionnaire

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 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.Geriatrics in primary carePublic Health and primary car

Correction to: palliative care in advanced Huntington's disease: a scoping review (vol 22, 54, 2023)

Public Health and primary careGeriatrics in primary car

Palliative care in advanced dementia: comparison of strategies in three countries

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), The Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and The Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in The Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in The Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in The Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.Geriatrics in primary carePublic Health and primary car