Dementia and participation (completed)

The focus of this Ph.D. project is on participation for people with dementia.

About the project

This is a qualitative case study involving ten persons with dementia. Inclusion criteria: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score = 2  i.e. moderate dementia (4) able to communicate verbally. After consenting to participate, their family and professional caregivers were recruited.

A semi-structured interview guide was used in interviews with family and professional caregivers. Field notes were written after participant observation of interaction between persons with dementia and professional caregivers during morning care or activities at a day centre. The data were analyzed using thematic analysis set within a hermeneutical framework.   


The aim of the study is to gain a better understanding of the phenomenon of participation in dementia care.

Research questions are:

  1. How do persons with dementia participate in health-care decision-making?
  2. How do family and professional caregivers facilitate or inhibit the social participation of persons with dementia?    


Research question 1:

Persons with dementia are involved in autonomous/pseudo-autonomous decision-making by delegating decision-making to others, through shared decision-making or by not participating at all.

Research question 2:

Work on social participation – still in progress 


People with dementia cannot be assumed to be incapable of making decisions on the basis of their diagnosis alone. In spite of mental decline, they may still have extant abilities that can be activated. This is of importance for preventing excess disability, sustaining personhood and enhancing quality of life. 

The issue of impaired decision making will have a vast impact on the lives of persons with dementia, their families and on professional caregivers as dementia is a disease that progresses over many years. Dementia will also affect an increasing number of people in the coming years. It is estimated that currently 24 million people worldwide have dementia. 


Marit Kirkevold (Main supervisor)

Knut Engedal (Co-supervisor)


  • Østfold University College 


  • Fredrikstad municipality
  • Moss municipality
  • Spydeberg municipality

Project start and finish


Published Apr. 29, 2011 3:48 PM - Last modified Feb. 9, 2022 12:09 PM


Detailed list of participants