Kokemuksellista ja tuettua: Osallisuus muistisairaiden kokemana

emes in societal debates on ageing. Memory diseases
affect key aspects of a person’s ability to participate.
Research on the participation of people with dementia
(PWD) is needed to support the development of
services and policies that enhance their well-being
and empowerment. We examine the experiences of
PWD living at home (n=19) through semi-structured
interviews and a model of deductive qualitative analysis
developed for testing and extending theories. Findings
are presented under three themes: 1) participation as
control over everyday life and engagement in social
relationships, 2) participation as a lived experience, and
3) supported and restricted participation.
Participation often occurs in everyday life through
decisions on what to eat and what to do – or not to
do. Things that may seem ‘small’ or insignificant to
others may play a meaningful role in the lives of PWD.

For instance, feeling content at home or choosing not
to participate can represent important expressions of
agency. Participation may also be shaped by personal
history. A sense of identity as an active and independent
person can continue to influence experiences of
involvement, even when former activities are no
longer part of daily life. In many cases, participation is
either supported or constrained by carers and services.
Examples of supported participation include shared
activities, encouragement in social interactions, or
support in decision-making. Conversely, lack of services
or insufficient support can restrict participation. Our
findings highlight the need to understand participation
as diverse, relational, and contextual. Rather than
seeing it only as individual action, participation should
be understood as a supported, experiential, and shared
social experience. Developing inclusive services for
PWD requires broadening the concept of participation
and ensuring adequate support for both individuals and
their carers.