May 2001 - Ref 541
Exploring ways for staff to consult people with
dementia about services
Previous research has demonstrated that, given the right support,
individuals with dementia can express opinions about services.
However, staff need help with identifying and using opportunities for
meaningful consultation. This study by Kate Allan explored how staff
can encourage people with dementia to express their views and
preferences in the course of day-to-day practice. The focus was on the process of undertaking
service user consultation with people with dementia. The study found
that:
- A range of consultation approaches was effective for some
individuals at some times. These took both verbal and non-verbal
forms. Individual people responded variably to particular approaches
at different times and in different circumstances.

- Identifying starting points for consultation required careful
consideration of the person's strengths and needs regarding
communication, their background and interests, and apparent feelings
about aspects of the service. The kind of relationship they had with
members of staff was another important factor.

- Resources such as pictures, word cards and objects proved helpful
for stimulating conversation and interaction for some people. These
needed to be carefully chosen, again with the person's background and
current interests in mind.

- Providing opportunities for people to talk about services in an
indirect way, for example speculating on what another person's
opinions might be, usually worked better than asking people direct
questions.

- It was important to help staff to recognise their existing skills
and knowledge and to enhance their confidence. This was achieved by
encouraging them to talk about their experiences, ideas and feelings
regarding communication. This pointed to the need to incorporate more
time for reflection and discussion within the daily routine.

- The researcher concludes that service settings are complex
environments in which it is often difficult for staff to find
opportunities to undertake communication and consultation work, and to
follow through on plans. It is necessary both to address aspects of
the organisation which act as barriers to communication, and also to
support staff in utilising opportunities which present themselves
spontaneously.

Background
Over the past decade there have been major changes in the way
dementia as a condition is understood. It is now widely accepted that
communication is fundamental to good care, and it is seen as essential
that service providers consult people with dementia about their
experiences and preferences regarding their care.
This study set out to explore how staff can encourage people with
dementia to express their view of services within the constraints and
complexities of normal care settings. The focus was on the process of
undertaking service user consultation work, rather than attempting to
gather people's opinions about care.
Thinking about these issues is at an early stage. This work was
speculative and exploratory. The findings should be interpreted in
that light.
Embracing individuality
Dementia affects different people in different ways and does not
obscure the individual character of the person affected. Given this
variability, the diversity of situations in which individuals find
themselves, and the range and complexity of services, efforts to
consult users about their preferences and needs had to be developed on
an individual basis.
This meant taking the background, personality and current interests
of the person into account. Consideration had to be given to
individuals' strengths, needs and preferences regarding ways of
communicating, and what circumstances would be most favourable to
these.
Developing approaches to consultation also meant considering the
particular character of the person's relationship with the services
they were using. The kind of relationships service users had with
individual care practitioners was also an issue.
As well as being an important aspect of research, the issue of
consent is central to the practice of involving the person in their
care. A novel consent procedure, which attempted to keep the
individual at the centre, was used in the study.
Approaches tried by staff
Consultation work can be approached in many ways. For some it took
the form of a verbal exchange in the course of intimate care, or
during other activities such as trips out of the service setting or
recreational pursuits such as singing, dancing and watching
television. Other staff used pictures or other visual stimuli as a
focus for more extended conversations or interaction. Staff were often
surprised by how much was expressed at these times.
Some practitioners focused on non-verbal approaches to
consultation. They often started by observing non-verbal reactions and
modifying an activity or routine accordingly. Given the subtlety and
largely unconscious nature of much non-verbal communication, this
proved challenging. However, once they started thinking about these
aspects of expression and interaction, staff became fascinated with
what they noticed and learned.
The responses of the participants with dementia to the approaches
tried varied, reflecting individuals' differences as people and their
different experiences of living with dementia. However, as a general
observation, indirect approaches which allowed the service user the
maximum degree of control over what was spoken about, and in what way,
seemed to be the most effective, for example, rather than asking
direct questions about someone's opinions, showing them a picture of
another person with whom they might identify, and inviting them to
speculate on what they might think or feel about aspects of a service.
Whatever was done, it was crucial that the emphasis was on
providing opportunities for the person to express themselves, rather
than adhering to a specific procedure or technique.
Practitioners' perceptions of their own role
Many of the staff who participated in the project initially
expressed apprehension or doubt about their ability to contribute.
They were not sure if they had the right knowledge or skills, even
when it was evident that they were able to communicate successfully
with service users. One practitioner said:
"I was very nervous and unsure about where to start and about
my own capabilities."
Throughout the work, attention was given to helping staff to
identify the things they did which were special and important, and
boosting their confidence to try out new things.
The role of reflection and documentation
The project highlighted the importance of providing opportunities
for staff to reflect on and talk about their experiences. It was often
only once a practitioner had tried something out and then had the
chance to talk about what had happened that new insights and ideas for
developing the work emerged.
The pivotal role of reflection time was particularly evident when
small groups of staff were able to come together to talk about what
they were doing. There were many occasions when the researcher
observed staff sharing stories about incidents, ideas about the
meaning of words and actions, and feelings about individuals and
relationships. Staff enjoyed and valued these times, which helped them
to develop their understanding of the work and their own part in it,
and to learn more about their colleagues and how they functioned as a
team. One member of staff said about these sessions:
"Often you remembered things when we were all together in
discussion."
Many staff kept written notes about their work over and above any
usual requirements. Although this was always an effort, many of those
who managed it commented on how helpful it was. It seemed to serve
several functions:
- writing was another way of reflecting on work undertaken;
- the act of writing about initiatives probably helped to fix
details and reflections in the practitioners' minds;
- it was a reminder to staff and promoted continuity, especially
if there had been a break in time between initiatives;
- where other staff had access to notes, they served as a form of
communication and sometimes a stimulus to the sharing of experiences
and insights.
In addition, many staff made audio recordings of their
conversations with participants. Almost all of the practitioners
initially found the prospect of recording themselves speaking to other
people daunting, but after discussing their feelings and the potential
benefits and learning about others' experiences, they were willing to
try it out. Having overcome their apprehension, most found this
practice extremely helpful. It highlighted both the complexity and
depth of what was talked about. They also learned a great deal about
their own communication style and that of the other person. One
practitioner said:
"I think it is an excellent way to communicate on a one-to-one
basis, and you do actually forget the tape recorder is on and relax
very easily."
Facing the challenges
There were often difficulties in keeping to planned arrangements
for communication and consultation due to a range of factors which
characterise care settings, particularly residential services. These
included day-to-day changes in staffing arrangements, fluctuations in
the well-being and needs of service users, whether or not participants
wished to undertake work for the project at any one time, variations
in the energy of staff, and so on.
Attention to the practical constraints of undertaking planned work
revealed that even in residential services the amount of time that
staff have to spend with an individual over the course of, say, a week
is very restricted. This is particularly the case for part-time staff.
Working closely with people who are experiencing such profound
changes in their lives as those with dementia is personally extremely
demanding. For staff to provide high quality care they needed
appropriate support, such as regular opportunities to talk about what
was happening and how they felt about it. More specifically, exploring
ways of consulting service users about their needs is a complex
activity, and again staff need to be supported both in generating
ideas and in reflecting on their efforts. The potential for
consultation work to touch on personal issues for staff should also be
borne in mind.
The place of consultation within care
The multi-faceted and variable situations in which people with
dementia find themselves mean that consultation needs to become an
integral and ongoing part of what happens from day to day and week to
week if it is to be effective.
Embracing this could seem a daunting objective. However, although
it did in some senses constitute more work for staff, when a
'breakthrough' was made - perhaps an occasion when a new idea was
communicated or when familiar words or actions were understood in a
new way - practitioners found this exciting and rewarding. It seemed
to reinforce their sense of meaning in the importance of what they do.
One member of staff said:
"You have a better understanding with the client and now have
built a better relationship with them."
Conclusions for policy and practice
This study demonstrated that it is possible for staff in busy
service settings to undertake meaningful consultation work with people
with dementia, even those who have significant difficulties in
expressing their ideas, needs and preferences.
Staff had a natural interest in the subject of communication.
Finding ways to support them in enhancing and deepening communication
with service users has the potential to transform their understanding
of their role, the people for whom they care and the nature of
dementia as a condition.
However, tendencies on the part of staff to underestimate their own
skills and knowledge, and some features of the ways that services are
organised, readily combined to constrain the potential for
communication and consultation to take its proper place.
The researcher suggests that ways forward include:
- Reinforcing services' commitment to the centrality of
communication throughout care practice;
- Helping staff to become more aware of the skills and knowledge
they already have, and through enhanced self-esteem and confidence
encouraging them to develop their resources further;
- Making a greater commitment to supporting staff in reflecting on
their experience of working and communicating with people with
dementia;
- Subjecting a range of organisational features of services to
scrutiny in terms of how they affect communication and consultation
practice.
About the study
The researcher worked with 40 practitioners (most of whom were
unqualified) in 10 services (day, residential and long-term nursing
care, and also a counselling service) in Scotland and England. A total
of 31 people with dementia took part in the study. A wide range of
communication issues were represented within this group. The fieldwork
phase in some of the services lasted 10 months. In others, it was as
short as 6 weeks. Work took an individualised and developmental form,
and attention was paid to the range of factors which affected the
course and progression of the work.
How to get further
information
The full report, Communication and
consultation: Exploring ways for staff to involve people with dementia
in developing services by Kate Allan, is published for the
Foundation by The Policy Press (ISBN 1 86134 318 3, price £16.95).
Click on the 'order report' icon in
the left margin to order online.
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