Experiences of dementia related to activity engagement and provision of care
‘People with dementia and their
relatives: personal experiences of Alzheimer’s and of the provision
of care’ (Aggarwal, Vass, Minardi, Ward, Garfield and Cybyk, 2003)
reviewed by Becky MacGillivray, Band 5 Occupational Therapist
(Betsi Cadwaladr University Health Board) and graduate from the
York St John University BHSc (Hons) Occupational Therapy
Programme.
The study’s main aims were:
- To obtain the views of people with dementia about their
experiences of dementia and provision of care by asking the people
with dementia directly.
- To obtain the views of the relatives of people with dementia
about their experiences of dementia and provision of care by asking
them directly.
This small study was part of a broader study investigating the
links between dementia, care and communication (Vass et al, 2002).
Semi structured interviews were conducted with
- 27 people at various different stages of dementia (17 residents
from various residential settings and 10 from day care
centres)
- 28 relatives of people with dementia (18 relatives of people
with dementia within the residential setting and 10 relatives of
people with dementia within the day care centre).
Next of kin were interviewed separately to the people with
dementia. All participants were from the UK and of Jewish origin as
research was carried out in collaboration with ‘Jewish Care’.
Despite this the researchers felt the results could be relevant for
other people with dementia. Stimulus materials such as pictures of
different aspects of service, three faces with different
expressions (sad, neutral and happy) were used to assist people
with dementia to express their views.
Ten of the 17 people within the study with dementia that lived
in residential settings were able to provide their views on the
services they experienced. The results found that people with
dementia reported a lack of choice, independence, stimulation,
social opportunities and lack of activities in care homes. All of
the 10 people with dementia whose views were obtained reported that
they were unsatisfied with the levels of activity, choice or
independence. Five participants indicated that they were unhappy
being in the home. Levels of privacy and the physical environment
were two areas that were unsatisfactory. Two residents reported
that they were relatively happy being in the home, with one
suggesting that having company was a reason for this.
The study found that seven of the ten participants in the day
care centres rated their experience very positively. One other
participant was unable to provide a response with the remaining two
giving neither a positive or negative response. Overall the
participants in the day care centre settings rated their
experiences far more satisfactory than those in residential
settings. Levels of interaction, activity, choice and independence
were reported to be far higher in the day care settings.
Overall relatives of people with dementia reported that they
felt the people with dementia were satisfied and happy in the
residential and day care settings. This was a contrast to the views
of many of the participants from the residential settings, some
participants particularly from the day care settings and relatives
did however give similar views to their relatives.
A key issue raised by participants in the study with dementia
was the experiences of loss as a result of their dementia. Loss of
independence and memory loss were the two factors rated most highly
by both people with dementia and relatives. People with dementia
reported these experiences of loss were very sad. For the relatives
the key experiences of dementia were psychological burden and
physical burden and they too often found the experience
upsetting.
This article was useful for me as a researcher about to engage
in research with people with dementia as it demonstrated a variety
of different ways to help facilitate people with dementia engaging
in research. This study also demonstrated to me that people with
dementia were able to engage in research providing ethical issues
are considered. It highlighted to me that a third party approach
(asking someone how they would describe the care setting to a third
person) is useful to assist people with dementia to provide
responses. This could of helped during my interviews with people
with dementia had we needed alternative methods to prompt
participants.
This study highlights how effective it is to involve both people
with dementia and relatives in research to ensure the most in depth
responses are obtained. Involving people with dementia in research
and providing them with the opportunity to express their views is
an area that I feel strongly about. I feel this article
demonstrated how to do this in a sensitive manner, ensuring
potential ethical issues such as the well being of participants and
confidentiality were considered.
Overall from this research there is a direct correlation between
the amount of activities, levels of interaction, choice and
independence that participants were receiving and how satisfied
they were with the care settings. This is of key significance to
occupational therapists who aim to promote independence and choice
for clients by engaging them in meaningful activities. By engaging
clients with dementia in occupational therapy not only is their
quality of life improved by increasing the sense of well being and
satisfaction but also alternate methods of completing tasks and
techniques to help maintain existing skills, such as fine motor
skills, can be taught to clients.
If you wish to read the full article the reference is:
Aggarwal N, Vass A, Minardi H, Ward R, Garfield C and Cybyk B
(2003) People with dementia and their relatives: personal
experiences of Alzheimer’s and the provision of care Journal of
Psychiatric and Mental Health Nursing 10 (2) 187- 197