Mapping Moments: Establishing new directions for dementia studies through participatory action research

In the United Kingdom there are approximately 850,000 people living with dementia. Of this total, 25,000 people are from black, Asian and minority ethnic communities and around 42,000 people
live with dementia under the age of 65. The diagnosis of dementia at all ages is life-limiting and
there remains no cure for the vast majority of the dementias, including Alzheimer's disease which
is the most prevalent type. Grounded in the pioneering work of the social psychologist Tom
Kitwood in the late 1980s, the dementia studies field has gradually opened-up to support the
personhood of people with dementia and to identify barriers to their well-being and social
inclusion. Recently, social researchers, spearheaded by Pia Kontos in Canada
3
, have proposed that
people with dementia are able to demonstrate 'embodied selfhood', i.e. the notion that the body
is central to the outwards expression of self-identity. For people with dementia, such positioning
advances study away from a sole focus on cognitive functioning and considers how a sense of
agency can be maintained through a person's actions, gestures and sounds. This is important,
especially for people with the more advanced stages of dementia, where verbal communication
and autobiographical recall are significantly compromised.
It is in this space where creative arts programmes have begun to develop new ways of thinking
and care practices. Whilst a broad range of creative arts programmes are available to people with
dementia, participation in music is by far the most frequently reported
. Here, the operational
definition of music is broad and encompasses music therapy delivered by a qualified music
therapist, choirs, and musical performances, for example. However, systematic and/or Cochrane
reviews of the quantitative literature that focus on music and dementia reveal mixed outcomes,
with little, if any, benefit for the person with dementia

. Whilst on the one hand this is
disappointing, on the other hand recent extensive work by Reilly et al.

has shown that the
current, conventional ways of measuring outcomes in creative practice trials are not sensitive
enough to capture what it is that is most important to people with dementia, such as making
friends and having fun together. Interestingly, more narrative-based reviews of the qualitative
literature that have focussed on the personal benefits of music for people with dementia have
produced more encouraging findings. As an illustration, a thematic review of 18 qualitative studies
on the benefits of music for people with dementia by Dowlen et al.
revealed the importance of:
Taking Part; Being Connected; Affirming Identity; and Immersion 'in the moment'