[Development of a decision aid for participative advance planning for people with dementia and their relatives].
Entwicklung einer Entscheidungshilfe für partizipative Vorausplanungen für Menschen mit Demenz und deren Angehörige.
Advance Care Planning
Alzheimer´s Disease
Decision Aid
Patient Autonomy
Shared decision Making
Journal
Der Nervenarzt
ISSN: 1433-0407
Titre abrégé: Nervenarzt
Pays: Germany
ID NLM: 0400773
Informations de publication
Date de publication:
Nov 2020
Nov 2020
Historique:
pubmed:
30
4
2020
medline:
11
11
2020
entrez:
30
4
2020
Statut:
ppublish
Résumé
Patients with a diagnosis of dementia face various important social and health-related decisions. Due to the progression of the disease it seems crucial that patients try to deal with these decisions early in the course of the disease to have the opportunity to make decisions autonomously. Professional support can help to plan in advance according to the wishes and possibilities in an effective and individualized manner. The instrument was developed in a multiphase process based on advance care planning and shared decision-making. The prototype was pretested on 8 patient-relative dyads from a special outpatient department for early recognition and adapted as best as possible to their needs. Subsequently, in a pilot study the applicability of the decision aid was tested as an intervention in a further 19 patient-relative dyads with trained conversion attendants (diagnosis of Alzheimer's dementia or mixed form; mini mental state examination, MMSE (Mini-Mental-State-Test-Summenwert) >20 and <27). The result was a written decision-making aid for people with early stage dementia and their relatives, which supports the decision-making process (health care proxy, advance directive, living and care, driving ability). The first results showed good acceptance and handling. Patients and relatives dealt with the individual topics to a high degree and found them to be highly relevant. Despite positive feedback from the participants with respect to acceptance and applicability, there were major difficulties in recruiting. In the future, the systematic use of decision support as part of routine care could help to support the decision-making process in this patient group.
Sections du résumé
BACKGROUND
BACKGROUND
Patients with a diagnosis of dementia face various important social and health-related decisions. Due to the progression of the disease it seems crucial that patients try to deal with these decisions early in the course of the disease to have the opportunity to make decisions autonomously. Professional support can help to plan in advance according to the wishes and possibilities in an effective and individualized manner.
MATERIAL AND METHODS
METHODS
The instrument was developed in a multiphase process based on advance care planning and shared decision-making. The prototype was pretested on 8 patient-relative dyads from a special outpatient department for early recognition and adapted as best as possible to their needs. Subsequently, in a pilot study the applicability of the decision aid was tested as an intervention in a further 19 patient-relative dyads with trained conversion attendants (diagnosis of Alzheimer's dementia or mixed form; mini mental state examination, MMSE (Mini-Mental-State-Test-Summenwert) >20 and <27).
RESULTS
RESULTS
The result was a written decision-making aid for people with early stage dementia and their relatives, which supports the decision-making process (health care proxy, advance directive, living and care, driving ability). The first results showed good acceptance and handling. Patients and relatives dealt with the individual topics to a high degree and found them to be highly relevant.
CONCLUSION
CONCLUSIONS
Despite positive feedback from the participants with respect to acceptance and applicability, there were major difficulties in recruiting. In the future, the systematic use of decision support as part of routine care could help to support the decision-making process in this patient group.
Identifiants
pubmed: 32347327
doi: 10.1007/s00115-020-00911-2
pii: 10.1007/s00115-020-00911-2
pmc: PMC7606278
doi:
Types de publication
Journal Article
Langues
ger
Sous-ensembles de citation
IM
Pagination
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