Assessing the mental health needs of older people
Reid D, Ryan T & Enderby P (2001) What does it mean to listen to people with dementia? Disability and Society 16 (3) pp.377-392
Aims and method
This study aimed to explore the question of unmet need in relation to people with dementia receiving day respite services and to consider their status as service users and people who actively shape their care.
A total of 19 people with dementia were interviewed in 3 day-care settings after 3 initial 'familiarity' visits. One man was interviewed in his home. The day-care setting was chosen so that the people with dementia could be met on their own terms away from their caregivers.
The difficulty of obtaining informed consent from people with dementia was negotiated using a system of 'process consent' where questions and reminders about a person's participation in research are ongoing. The research was explained to day care attenders using a conversational approach and they were frequently reminded of their right to opt out at any time.
Some of the participants were not aware of their dementia diagnosis, and acknowledging dementia was not felt to be a prerequisite for people having valid opinions about the place they were spending time in.
Many day care attenders spoke about 'being here' when referring to the day care centre and none introduced service-related terms such as 'day-care'. Some saw it as 'a nice break' for themselves or their carers. Most did not see themselves as using a service.
Satisfaction was expressed about the day-care services. Attenders valued the company of other people and the opportunity to meet and make new friends, despite the initial reservations cited by many. These early anxieties related to unfamiliar people and surroundings, especially in relation to the discussion group. One woman feared her family's motives and first thought they were putting her in residential care. The man interviewed at home did not attend day-care because he did not wish to attend a group-based setting.
People highlighted the social advantages of being in a group where they could engage in conversation and enjoy the encouragement of others to participate. They differentiated themselves from others in the group and often described how they felt compassion towards the people there. There was a sense of interdependence and solidarity.
In the majority of cases attenders felt that 'being here' was an enjoyable experience and felt they were being cared for. There were positive attitudes towards staff and many of the older people felt secure in the knowledge that assistance was available should they need it.
Some sources of satisfaction were found in being given 'authority', responsibilities and the chance to exercise choice. Many participants had agreed to join the service. Physical activities were enjoyed by the majority of day care attenders, particularly the men. However, one man wanted greater physical activity and another reported finding little benefit from participating in the discussion group.
Some of the attenders recognised that their lives had changed and expressed concerns about difficulties with communication and problems with memory. Others felt less concerned about their age and liked to keep active.
The majority of the older people interviewed said they felt confident to voice concerns and ask for things they need.
People with dementia do not have a uniformity of experience, but have individual voices and unique life experiences. They are people who have ongoing personal lives in which experiences are influenced by life outside care settings. The perspectives on life given by people with dementia can represent information for service development.
Those interviewing people with dementia need to be aware that the vocabulary of the care setting can be problematic. Often people with dementia in day-care settings do not consider themselves as service users in the conventional sense. Staff could be trained on how best to establish a person's understanding of why they are in the setting and explore what they may want from their visits.
To avoid a potential conflict of need between people with dementia and their caregivers, service providers need to understand that care is something only people with dementia experience directly. They can be the starting point for defining their own unmet needs, and should be viewed as experts of their own experience.
It is possible to engage people with dementia in research about their experiences and needs. Researchers and service providers need to devise ways of actively listening to people on an individual basis and responding imaginatively to what they hear.