Effects on quality of life and family caregiving experiences by the Namaste Care Family program for advanced dementia
Projectomschrijving
Namaste Care is een Amerikaans zorgprogramma dat zich richt op de levenskwaliteit van verpleeghuisbewoners met ernstige dementie en hun naasten. Contact hebben staat centraal, bijvoorbeeld door aanraking of door iets samen doen. In andere landen wordt dit dagelijkse programma zeer gewaardeerd.
Doel
Het doel van dit project is het onderzoeken van dit zorgprogramma in Nederlandse context.
Aanpak
De onderzoekers gaan het programma testen in 16 Nederlandse verpleeghuizen en bij mensen thuis. Ook willen zij familie en vrijwilligers meer bij het programma betrekken en nog duidelijker maken wat zij kunnen doen in de laatste dagen van het leven van iemand met dementie. De effectiviteit van het Namaste Care Familieprogramma wordt onderzocht via vragenlijsten, interviews, doktersgegevens en het observeren van de verpleeghuisbewoners. Verbetert de levenskwaliteit? Ervaart de familie de zorg positiever? En zijn de verbeteringen kosteneffectief?
Resultaten
De verwachting is dat de extra tijdsinvestering van familie en vrijwilligers in hun naaste met dementie direct ten goede komt aan hen allemaal. Als deze verwachtingen uitkomen, wordt het Namaste Care Familieprogramma verder ingevoerd in het verpleeghuis en zo mogelijk ook bij families thuis.
Het programma bleek kosteneffectief te zijn. De bevindingen uit de kwalitatieve studies zijn positief met aanknopingspunten voor het optimaliseren van het programma. Hoewel het programma erg gewaardeerd wordt door alle partijen, bleek o.a. uit diepte-interviews met medewerkers, naasten en vrijwilligers dat er behoefte was aan extra scholings- en begeleidingsopties, naast de reeds beschikbare toolkit.
Vervolg
Om vervolg te geven aan het project, ontving het een VIMP-subsidie ten bate van Verspreiding- en Implementatie. Dit project heeft als titel: Namaste Familieprogramma VIMP
Meer informatie
- Namaste Familieprogramma Toolkit
- Bekijk een video over het Namaste programma
- Lees het interview met onderzoeker Hanneke Smaling
- Bekijk het artikel Namaste Familieprogramma: aandacht voor betekenisvol contact
- De powerpoint presentatie over het Namaste Familieprogramma, trainen van vrijwilligers
- Lees meer over de belangrijkste resultaten over dementie, waaronder het Namaste programma
Producten
Auteur: Smaling HJA, Joling KJ, Francke AL, Achterberg WP, Volicer L, Simard J, van der Steen JT.
Auteur: van der Steen JT, Joling KJ, Francke AL, Achterberg WP, Smaling HJA.
Auteur: Smaling H, Joling K, Achterberg W, Francke A, van der Steen J.
Auteur: Smaling HJA, Joling KJ, Doncker SMMM, Achterberg WP, Francke AL, van der Steen JT.
Auteur: Smaling H, Joling K, Doncker S, Achterberg W, van der Steen J.
Auteur: Smaling HJA, Joling KJ, Achterberg WP, Francke AL, van der Steen JT,
Auteur: van der Steen JT, Smaling HJA.
Auteur: Smaling HJA, Joling KJ, Achterberg WP, Francke AL, van der Steen JT.
Auteur: Smaling HJA, Joling KJ, Achterberg WP, Francke AF, van der Steen JT.
Auteur: Smaling HJA, Joling KJ, Donckers SMMM, Achterberg WP, van der Steen JT.
Auteur: Smaling HJA, Joling KJ, Achterberg WP, Francke AL, van der Steen JT.
Auteur: Smaling HJA, Davies D en Gopalsamy S.
Link: https://www.slideshare.net/Waardigheid_en_trots/
Auteur: Zorgcentrum Aelsmeer
Link: http://www.zorgcentrumaelsmeer.nl/namaste-care-mensen-dementie-zorgcentrum-aelsmeer/
Auteur: Namaste projectgroep
Link: https://www.lumc.nl/org/unc-zh/onderzoek/Kwaliteit-van-leven/
Auteur: Namaste Familieprogramma projectgroep
Auteur: Smaling HJA, Joling KJ, van de Ven P, Bosmans JE, Simard J, Volicer L, Achterberg WP, Francke AL, van der Steen JT.
Magazine: BMJ Open
Verslagen
Eindverslag
Samenvatting van de aanvraag
Quality of life of people with advanced dementia in the Netherlands can be improved. People may be isolated as they cannot participate anymore in the activities that are offered. Some present challenging behaviors, and families may be frustrated with limited contact with their loved ones. A US program called Namaste Care aims to increase quality of life and comfort specifically for these people. It incorporates person-centered and palliative care approaches and includes end-of-life care. Loving touch, presence of others, and engaging people in meaningful activities, such as gentle personal grooming, are central. Evidence accumulates that the program successfully changed the lives of people and their families in US, UK, and Australian nursing homes. In particular, it improved behavior, reduced use of psychotropic medications and did not increase health care costs. With the committed support of the developers, experts, and an end-user panel with families and volunteers, we propose to modify the program to sustainably fit it into the Dutch health care landscape. The adapted Namaste Care Family program will emphasize family and volunteer involvement, and end-of-life care. In 16 nursing homes, a cluster-randomized controlled trial will assess if the Dutch Namaste Care Family program improves outcomes in a cost-effective manner. We will match pairs of homes on ongoing psychosocial and family programs before we randomize to the intervention or control conditions. The primary outcomes are patients’ quality of life and families’ positive caregiving experiences. These are measured with the valid Dutch version of the Quality of Life in Late-Stage Dementia (QUALID) scale, and the validated Dutch Positive Experiences Scale (PES). Assessments are at baseline and multiple times over 12 months and also include an after-death assessment up to after 24 months, for efficient longitudinal analyses of data of 192 patients enrolled at baseline. Secondary patient outcomes, all measured with valid Dutch-version instruments, are (dis)comfort, behavior, health problems, and psychotropic medications. Secondary family outcomes are caregiver burden, (pre)grief, and perceptions of caregiving role. Costs from a societal perspective are measured with the Dutch standardized TOPICS-MDS. Semi-structured qualitative interviews with families, volunteers, nurses and managers will assess feasibility, accessibility, and sustainability. We will adapt and (pilot)test the program also in the community, anticipating more people with advanced dementia staying there and the importance of helping family caregivers to achieve the best possible quality of life and positive caregiving experiences. To assess effects and the most effective components (elements) of the program, we will perform longitudinal mediation Structural Equation Modeling (SEM) analyses. Based on literature and experiences with Namaste elsewhere (Annex 1), we refine the testing of effects in three ways. First, we test mediation through increased person-centeredness, patient engagement, and family visits (instrument translation starts spring 2014). Second, we will test if the degree to which program elements are implemented at the individual level affect outcomes, also separately for touch and non-touch activities. Third, we will test if effects differ for subgroups (moderation) such as male patients, those with agitation or apathy, in pain (for moderating patient outcomes) and by family caregiving burden at baseline (for family outcomes). An economic evaluation will relate the difference in societal costs to the difference in quality of life and positive caregiving experiences attributed to Namaste Care Family. Both a cost-effectiveness and a cost-utility analysis will be performed. Statistical uncertainty will be estimated using bootstrapping, and results presented using cost-effectiveness planes and cost-effectiveness acceptability curves. Regarding feasibility, we have already recruited 8 nursing homes; all 4 organizations we invited agreed to participate, with 1 to 3 homes. They indicated the proposed Namaste Care Family matched their philosophy of care and priorities how to better involve families. We asked four local shops, and all are willing to donate products. Our team is excellently positioned and equipped to perform the project, each member having carried out successfully similar large projects, and 2 experts performing the analyses. Regarding sustainability, any resources such as supplies lists and an instructional video will be translated or developed, and improved for an accessible toolkit for further implementation. We will train “champion” families and volunteers to become trainers themselves. Mediation, moderation, and cost effectiveness analyses allow for informed limiting of the future intervention to the most cost-effective elements for patient subgroups (e.g, those with apathy), and activities planning (e.g., if touch approaches were most effective).