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Experiences of dementia related to activity engagement and provision of care

Rebecca MacGillivray‘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