Consulting people with memory loss

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Consulting people with memory loss

• Collaboration between Dementia Voice and UWE
  funded by Department of Health under section 64
  grant

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The Dignity Challenge (SCIE, 2006).

• Enable people to maintain the maximum possible
  level of independence, choice and control
  including working at the pace of the individual,
  avoiding making assumptions about what people
  want or what is good for them, providing people
  with opportunities to influence decisions
  regarding our policies and practices and
  promoting choice that is not risk averse.

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• Listen and support people to express their needs
  and wants including listening with an open mind
  to service users, supporting people to express
  their needs and preferences in a way they feel
  valued, staff demonstrating effective
  interpersonal skills in communicating with people
  with dementia or sensory loss

4

• Ensure people feel able to complain without fear
  of retribution having a culture in which we can
  learn from mistakes and not blamed, reassuring
  carers and clients that nothing bad will happen
  if they do voice complaints, demonstrating audit,
  action and feedback from complaints

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• bureaucracy, staff shortages, poor management
  and lack of leadership, absence of appropriate
  training and induction and difficulties with
  recruitment and retention leading to overuse of
  temporary staff. There are also wider societal
  issues, including ageism, other forms of
  discrimination and abuse. A great deal of work is
  needed to tackle negative attitudes towards older
  people, to bring about culture change and to
  ensure that such attitudes have no place in the
  health and social care sectors.small changes can
  make a big difference in day to day practice.
  (SCIE, 2006, p5)

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Project panels for people with dementia original
title

• Aim to examine ways in which older people with
  dementia can be consulted
• Objectives
• Review current work on service user consultation
  and particularly the use of consultation panels
• Interview users, carers and other stakeholders
• Identify different models of user involvement
• Identify localities\agencies in which to
  establish consultation exercises

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Conclusions of Pilot phase

• It is possible to consult people with memory loss
  dementia they are able to express choices and
  preferences but they need to be encouraged to do
  so
• Literature highlighted that people with memory
  loss had been explicitly excluded from project
  panels used in consultation exercises
• Importance of established relationships with
  relatives and carers in helping people make
  choices
• The quality of facilitation is important in the
  process

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Phase 2 key themes

• Consultation is possible but attention to the
  processes involved
• Skills of staff involved is crucial
• Person centred approach
• Using carers as conduits for consultation needs
  examination
• Project espousing social model not concerned
  with specific diagnosis so use memory loss

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3 models of consultation

• Model 1 individual interviews conducted with
  people at an early stage of memory loss to
  establish their wishes and preferences possibly
  to make a record for the future
• Model 2 discussion groups undertaken within a
  day care setting with people with moderate memory
  loss choosing to take part facilitated by day
  care staff
• Model 3 carers as conduits aimed at
  consultation with people with advanced stages of
  memory loss using relatives or support workers
  who have an established and close relationship
  with the service user. Encouraged to use multiple
  methods of communication and to keep records.

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Ethical issues

• Attention given to preparation of information and
  consent forms
• Consent given wherever possible by the service
  user and rechecked often
• Arrangements made with agency to give support to
  service users, carers and staff if required
• Attention given to researchers methods of
  introduction

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Methods

• Model1Interviews Topic guide developed 11
  interviews completed in peoples own homes
• Model 2 Group Discussions Briefing session plus
  briefing notes for group facilitators and
  debriefing session planned- 8 discussions
  recorded in 3 organisations.
• Model3 2 workshops plus training pack for mixed
  groups of community support workers and family
  carers delivering model 3. 7 observations
  completed and debriefing session in 1
  organisation. Process started but not completed
  in another organisation

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What people said about decision making

• Attending the centre
• I come because I wish to, I feel it is essential
  being part of a group to share things and getting
  out is also important because you can get locked
  in by four walls indefinitely.Its no good
  becoming a hermit, that way you learn nothing .
  (Group 4)
• Making choices within the centre
• H. I think we need to focus on the fact that we
  are mature adults and not infants and stop the
  silly infantile things we do.
• F. Like the singing?
• H. Yes. Put your left foot in, put your left
  foot out, do the hokey cokey. Its alright once
  for a laugh, but week after week, no.
• F. When the singing is on, would you like to walk
  out and sit somewhere else?
• H. Yes, I would. (a) because I cant sing and
  (b) I think its a bit infantile. (Group2)

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Problems of being too directive

• And it was weird because when we were discussing
  things and we were asking them if they knew what
  they wanted to do they didnt want to complain
  they were so quite happy and they were asking all
  the time why are you asking me these, how come
  you are at the centre, because we wanted to come
  and we really enjoy. (Fac4)

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Dealing with difficult issues

• its difficult to say no when you are locked in
  it really. You cant suddenly say, I dont want to
  go there, can you? I would have a devil of a job
  justifying it by saying no. Its clean and well
  run but not the same as being at home. Id rather
  come here for the week instead cos its familiar
  .I can walk in and shake hands with everyone.
  (Group2)

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Helping people feel confident to speak out

• R1 I think in a way, because I forget a lot, so
  if there is a way, for me, to, and Im dumbstruck
  when you say that words on a subject that Im
  bothered about, and that does me good, you see? I
  cant always answer your questions, I am not very
  good at this. I cant do it
• F Thats alright . If you feel you want to join
  in M, then do. You have a lot to offer in your
  opinions
• R1 And I can always come and talk to you. We can
  always talk to you, cant we?(group5)

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What did we learn from the group discussions?

• It takes time for opinions to emerge and views to
  be expressed people welcomed
• Unstructured worked best too many questions and
  too much formality made for anxiety
• Things that were difficult emerged in the
  discussions that would have been missed or could
  not have emerged elsewhere.
• People valued having time to express themselves
  and be listened to in groups or one with staff

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Model 3- carers as conduits for consultation

• 1. Community support workers role
• helped them stay in touch with their clients
  wishes and choices even in situations where there
  is no longer any verbal communication.
• I tried to respond to what you hoped are the
  feelings underlying the speech. I would try to
  respond as if I understood her and then she would
  say more and so it was a conversation of feelings
  and intent not literal meaning
• befriend rather than attend to physical care

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2 Community support workers role

• are able to concentrate on the mental and social
  aspects of the persons well being often at times
  when others around them might be overwhelmed with
  the physical necessities of care.
• the time to find out where they are at, where
  they are in their heads when they are trying to
  communicate( CSW2)
• negotiated regular short visits to suit the
  client and their family.
• I just go in as a friend, as a neighbour .just
  someone to pop in (CSW 1)

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3 Building trust and continuity

• The CSW service aimed to match workers and
  clients in a relationship which would continue
  through the progress and deterioration of the
  condition, sometimes over several years.
• An emphasis on building a trust and empathy
  firstly with the client and secondly their
  family.
• This continuity was valuable as it allowed the
  CSW to build a knowledge of their client over
  time which helped them identify or suggest
  activities that their client might like to do
• I have been going for the last four years, weve
  actually started off with them making their own
  decisions, going out for a walk, where to go ,
  which paper to buy..as they have progressed I
  have to help them decide (to do something they
  liked doing) and I have to encourage them.
  ..they are insecure and unsure of
  themselvesbut when they know youre going to
  let them grab hold of your arm and youre safely
  with them they feel much more confident.

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4 Supporting people in decision making

• The CSWs were able to engage with the
  complexities of clients wish both to make
  choices, their uncertainty about whether they
  could achieve them and their need for support to
  carry them out
• Sometimes my client will say I dont like my
  hairdresser but you know.. that they cant
  actually get there. You know they would be upset
  and embarrassed and upset if they tried so you
  try to dissuade them by saying its a bit of a
  way. ..so though you are cutting out a choice
  it is really genuinely not something that they
  could do. (CSW1)
• On the way to the post office she was on about
  her hair so I said we passed the salon shall we
  pop in and have look what its likewe made an
  appointment and I said make for when I can come
  back with you, Ill be with you, Ill just wait
  CSW4)

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5. Being able to act as an advocate

• The CSWs can play an advocacy role for their
  client with their family from within a context
  where they can appreciate the pressures on both
  the client and the carers.
• Some of them dont want to put on their
  family.they feel a burden to their family
  whereas they will discuss little things (that
  bother them) with us that they wouldnt say to
  their family (CSW 2)
• you can become a family member to them without
  any of the (emotional) hang-ups(CSW3)
• if theyre cross with their family, trying to
  make them do something they dont want to do
  theyll say I dont want to do that but I dont
  want to tell him, would you do that (CSW 1)

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What does it take to be a CSW?

• I believe youve got to have this sort of feeling
  for everyone. You got to be this sort of person,
  that can pick up vibes. If you are a Ive got to
  do it by the book sort of thing, that dont work
  (CSW 2)
• youve got to have a good line manager and a
  lot of training. A lot of its common sense, your
  own common sense. Youll work with how your minds
  telling you to work (CSW 6)

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• Were in a really amazing positionif we were
  unscrupulous, we could alter their lives to do
  anything. I think we have to be very careful that
  we dont impose our wishes on them, its very easy
  to think I wish Mr Mrs S would do this or
  thatso we have to be very careful to give them
  choices. (CSW 5)

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Implementing the social model of care for people
with memory loss

• Identifying and maintaining opportunities for
  people to retain their decision making potential
  preserving spaces and time
• Understanding the importance of building
  confidence and self esteem
• Connecting into families but being able to
  provide an additional source of support and
  friendship
• Being able to provide advocacy appropriately

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Staff views and organisational issues

• Staff tried to be person centred, but
  environment, time for training, tight schedules
  and attention to health and safety concerns got
  in the way
• Many staff in model 2 and 3 felt safe doing
  activities and found the unstructured approach
  challenging.
• Doing the workshops and having time to reflect
  was welcomed by the staff involved
• Supervision and systems for feedback and
  discussion increased staffs confidence to try
  new approaches.
• Attention and systems need to be in place to act
  on issues that were raised
• The support and positive encouragement of senior
  managers was essential

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Connecting

• At certain times in life the links between
  physical and social care have to be connected so
  it is important to keep a balance
• When communication is challenging support needs
  are high
• People with memory loss need to be supported in
  staying connected and the people around them
  need similar support to keep connecting with them
• Systems need to connect with the values of
  person centred care , respect and dignity and
  demonstrate them in practice