User involvement in dementia care

This publication is based on a review of the research literature and the grey literature on the topic user involvement in dementia care in, or relevant to, Norwegian conditions. No distinction between user involvement in dementia care involving home services and dementia care in nursing homes has been made. Users are defined as adults who receive dementia care services, or people who are affected by the service indirectly. The publication provide knowledge about central research and development, laws and regulations, government documents and other material that can give the individual reader an overview of the topic.

Key developments

User involvement makes great demands on both service users, service providers, and communities. User involvement is necessary in order to provide high quality dementia care in Norwegian communities. User involvement is not an integral part of dementia care services in most communities, by either individual treatment or organizational decisions. 

User involvement can accommodate different forms in dementia care, ranging from user representation in community councils to users expressing their own wishes and needs during treatment. By incorporating service users in research and community development, the issues service users are concerned with can become an integrated part of the knowledge development in the field. 

User involvement in dementia care in Norway facilitates a triadic perspective, where involvement is understood as a common process for users, next of kin and health professionals.

With the trend towards more municipal services, there has been a gradual change in the view of the patient role, also within dementia care. From being attributed to a passive role, the user and (particularly) the relatives are now considered as active participants in treatment. The new role requires users to acquire and use their experience qualifications, and employees must allow users to contribute.

Challenges and needs

Norwegian communities have paid little attention to user involvement in dementia care. Relatives may have taken care of the patient in the home over time. Often the need for help is detected late in the course of the dementia disease. When the patient first receive an offer of nursing home placement the need for help has already come a long way. Upon most admission talks in nursing homes the relatives are  invited, and not the patient. The patient himself does not receive the opportunity to express his own wishes and needs before a nursing home placement. There are tendencies of attitudes that exclude patients both with and without consent from contributing in their own treatment.

The attention has been more on user involvement for the next of kin. However, user involvement is most frequently practiced as individual adjustment of the relationship between users and professionals. There is a need to focus on systematic implementation of user involvement on an individual level in Norwegian communities.

Several user organizations are working to include users. A challenge is hiring users with own experiences in municipal services. This requires monitoring paths for users who want to work as support staff for others users, or in self- help groups, and establishing procedures for hiring users in municipal programs or services. 

Another, and very basic requirement, is a change of attitude in the dementia care field. International studies, especially from England, show that people with dementia can participate in their own services and treatment in an appropriate and meaningful way. Norway is behind this development. 

It is necessary to pay more attention to user involvement in dementia research and community development projects in Norway. User involvement knowledge is necessary and useful in dementia care services, and can be a more central part of practice, education and research.

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