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Consulting people with memory loss


Enable people to maintain the maximum possible level of independence, choice and ... her hair so I said we passed the salon shall we pop in and have look what it's ... – PowerPoint PPT presentation

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Title: Consulting people with memory loss

Consulting people with memory loss
  • Collaboration between Dementia Voice and UWE
    funded by Department of Health under section 64

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.

  • 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

  • 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

  • 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)

Project panels for people with dementia original
  • 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

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
  • 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
  • The quality of facilitation is important in the

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
  • Project espousing social model not concerned
    with specific diagnosis so use memory loss

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.

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

  • 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

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)

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)

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.

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
  • R1 And I can always come and talk to you. We can
    always talk to you, cant we?(group5)

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

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

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)

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
  • 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 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.

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. 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

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)

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)

  • 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)

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
  • Being able to provide advocacy appropriately

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
  • 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

  • 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