Early Intervention in PostDiagnosis Dementia

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Early Intervention in Post-Diagnosis Dementia
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"The Role of CMHNs in Post Diagnostic Support
Counselling Skills and Therapeutic
Opportunities."
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Making Links, Making Sense

• Aims
• To discuss issues of importance
• Link policy to practice
• Share best practice

• Key Theme
• Focus on the valuable contribution MH nurses make
  in improving the older persons experience of
  care.

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Issues of Importance

• Background
• PhD research intensive study of the experiences
  of persons with dementia, GPs and old age
  psychiatrists
• Findings indicated that people with a new
  diagnosis of dementia could be helped to come to
  terms with their diagnosis by therapeutic
  conversations
• Development of a model of therapeutic tasks in
  early dementia

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Background Study Context

• People with dementia
• Are rarely offered post diagnostic counselling
• Are marginalised by society
• Find it difficult to articulate their diagnosis
• Fear of being stigmatised

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Study Context (continued)

• Family and friends will not engage in
  conversation about diagnosis
• Leads to unexpressed emotion and difficulty in
  later years
• Lack of skilled listeners in the helping
  professions
• Nurses traditionally are the people most likely
  to be working in the field of dementia

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Linking Policy to Practice

• Made a national priority by Scottish Government
  in 2007
• HEAT target around early diagnosis and support
• National Review of Mental Health Nursing Rights,
  Relationships and Recovery
• Mental Health Delivery Plan

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Delivering for Mental Health

• Commitment 4
• We will increase the availability of
  evidence-based psychological therapies for all
  age groups in a range of settings and through a
  range of providers
• Targets
• Reduce the use of antidepressants (1)
• Reduce suicides (2)
• Reduce hospital readmissions (3)
• Early diagnosis and management (4)

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Rights, Relationships and Recovery Dementia

• Mental health services and mental health nursing
  must make the support of older people with mental
  health problems a priority. We need to make sure
  mental health nurses are prepared and developed
  for this
• Support mental health nurses contribution to
  delivering psychosocial interventions and
  psychological therapies services using a stepped
  approach to this development
• Adopting strengths and recovery-focused models,
  maximising self management and peer support
• Develop and maximise roles and capability in
  anticipatory care and early intervention
• Recognising carers as partners and supporting
  them in their caring rolethrough a strengths
  based, relationship focused approach
• Nurse consultants to lead the development of
  mental health nursings contribution to older
  peoples mental health services
• Create a more robust climate of learning,
  development, evaluation and research
• Regular clinical supervision
• Capability Framework

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Mental Health Nursing Forum Scotland National
Awards for Good Practice in Mental Health Nursing
2008And the winner is..the Magnificent 7!
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Sharing Best Practice

• What needed to be done?
• Setting the scene

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Toms Story

• Diagnosed with Alzheimers disease 9 days before
  Dot met him
• Retired pharmacist
• Lived with wife
• 3 adult children
• Knew about research process
• They embarked on a pilot study together

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Collaborative Design

• New to have someone with Alzheimers disease
  collaborating with the research design
• Advised on where, when and how to gain
  information (data collection)
• Advised on people to speak with, and frequency of
  meetings
• Discussed the findings together

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Learning to Live with a Diagnosis of Dementia

• 4 Key Themes
• Struggling with the emotional impact
• Daring to talk about Alzheimers disease
• Re-authoring their story
• The challenge facing relationships
• Dealing with the aftermath issues to be faced

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Struggling with the Emotional Impact

• Influenced by previous knowledge and experience
• Fearfulness was most common emotion

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Fearfulness and Other Emotions

• Fear of the future
• Fear of loss of identity
• Fear of the judgement of others
• Bitterness - why me?
• Depression
• Anxiety around sharing their feelings

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Some of the things people said about their
emotions

• Im a bit apprehensive about the long term
  prospect of thisthe thing that worries me is
  that it is going to go on deteriorating and then
  I will get to a stage when I dont know who I
  amand I forget who my wife isits very scary
  (Tom)
• I worry about the long term and then I think
  well, in the long term were all dead anyway!
  (Ian)

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Some of the things people said about their
emotions

• People will be watching for the next big mistake
  Im going to say the wrong thing or stupid
  wordsthen they will put me in a categoryanyone
  who knows will think less of meI am the one with
  the stigma and I feel anyone who knows will treat
  me differently (Janet)
• Its very scaryyou just get dumped in the
  dementia wilderness (Betty)

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Some of the things people said about their
emotions

• Just why have I got this blooming thing and
  people I know older than me have nothing (Ian)
• I have been very depressed - I felt that I might
  have retreated into my shell and refused to come
  out - I had closed the shutters down (Tom)

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Daring to talk about Alzheimers Disease

• Daring to tell
• To tell or not to tell
• Who should tell and who to tell
• The implications of telling
• The implications of not telling
• Reactions to the telling
• ITS GOOD TO TALK!

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Good to talk? What they said

• you tend to keep all the talk about it within
  the family, they know that youve got it and
  ignore it, so it is a help to talk about it!
  (Betty)
• it is good for youwe are talking, but ordinary
  people, they dont really know about it (Ian)
• Its very good to talk to somebodyyou feel you
  must discuss it with somebody...I thought I was
  going round the bend (Jenny)

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So What Needed to be Done?

• People with a new diagnosis
• Struggle with the emotional impact
• Dont get the opportunity to talk about it
• Find it hard to adjust their lives
• Cant always understand the change in their
  relationships
• How do they deal with the aftermath of
• their diagnosis and the issues that have to
• be faced?

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The Impact of a Diagnosis of Dementia the Need
for Emotional Processing

• Many professionals underestimate or ignore the
  emotional impact of a diagnosis
• In order to move on in a positive way, people
  need to deal with their emotions meaningfully
• People need more than written information
• How to take this approach forward?

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Therapeutic Tasks Modelof Early Intervention for
People with a New Diagnosis of Dementia
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The Therapeutic Tasks Model of Care -
Relationship Centred

• Exploring the possibility of life as normal
• Evaluating the usefulness of different sources of
  information
• Understanding the changing roles within their
  families and wider social network
• Understanding and dealing with the emotional
  process

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Therapeutic Tasks (continued)

• Addressing deep philosophical questions such as
  the possibility of loss of identity
• Embracing and coping with social stigma
• Creating a new and different identity
• Telling and retelling their story
• Finding a way through the health system

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Working with Older People in Scotland A
Framework for Mental Health Nurses (NES2008)
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What Next

• The research project was complete
• It had generated new theories
• They matched with the priorities of the SDWG,
  Alzheimer Scotland, Tayside MCND, Scottish
  Governments Mental Health Delivery Plan (HEAT
  targets 1,2 4), Rights, Relationships and
  Recovery
• Key need of people with dementia is the need for
  early intervention (Clive Evers, Alzheimer
  Society, July 2007)

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We Needed to Embed the Approach into Practice

• Joint project funded by Burdett Trust for Nursing
• 49,989

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!The Magnificent Seven!

• 7 RMNs working with people with dementia in the
  community across Tayside were enrolled on the
  COSCA Graduate Certificate in Counselling Skills
  at the University of Abertay Dundee
• Formed a learning set that met monthly for 6
  months to further develop the 9 Therapeutic Tasks
  Model of early intervention for people with a new
  diagnosis of dementia

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The Nurses ExperienceWhats Different?
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Personal Growth

• Looking at myself
• I suppose one of the things that I struggled
  with was looking at myself during the course, eh
  you know, there was a great deal of focus on
  knowing why you react in a certain way, what you
  avoid doing and why you avoid doing it.
• I learned a wee bit about my own avoidance
  techniques and why perhaps I am uncomfortable
  with certain conversations and that actually
  allowed me to develop not only as a nurse but as
  a person.

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Looking after myself The ability to say
no sometimes (laughing)! That is one of
the things, you know, looking at what type
of person you were and what generally you did
and I was always the person that would oh
right Ill do this Ill do that and I
would be stressed because I had so much to
do. So I have started looking at that
and just feeling comfortable saying, well
actually I am doing x, y z, just now so I
really cant manage to take that on board
and not feeling bad about it.
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Personal Awareness

• At the heart of change
• Self-awareness is a fundamental characteristic
  of the counselling process.
• This can feel threatening at first however,
  this unique experience has helped me to explore
  my feelings and opinions
• (exploring and knowing who you are)
• Realising that I was a rescuer, and that I have
  been trying to rescue people I have been working
  with
• (exploring and acknowledging what you do)

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Awareness and Exploring?

• An awareness of the perceptions and feelings of
  people with dementia
• Realisation that there are huge emotional issues
  attached to a diagnosis of dementia. In the past
  peoples emotions have been glossed over, but
  their emotions are so intense. I now practice in
  a way that allows open discussion about their
  perception of the diagnosis and their feelings
• (helping someone explore who they are)
• I feel now that I go to someones house, I
  havent got an action plan in my head. It makes a
  difference, the counsellingits them deciding
  what you are doing for them, not you that is
  going into their home deciding what you will do
• (helping someone explore what they want you to
  do)

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Person Centred (1)

• I found the personal development bit really
  good you know it really makes you think about
  things, about whats important, it makes you
  prioritize things and you know even with
  relationships ..and thats gone on into my work
  you know, I find that when I go out to see
  someone now I am not just looking at the form
  filling, the medicine and you know. I used to go
  in and think right Ive got to get this form
  filled in, Ive got an hour, get this form filled
  out and make sure Ive got the right medication,
  you know, and out the door as quickly as possible
  to get to the next one. I am not doing that
  anymore. I am going in without any paper or pen
  or anything you know and I just sit and listen
  and its amazing what you get from people by just
  not saying an awful lot, just nodding, just using
  the counselling skills basically.

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Person Centred (2)

• There was one lady I went to see the other day.
  She wasnt dementing. She was a lady who had
  been sexually abused as a child and I walked into
  the house and she wasnt going to talk to me
  about anything and I thought right Ill try this
  counseling skills here. within 15 to 20 minutes
  she really got into telling me you know problems
  and things that had happened and, eh, I think I
  sat with her for nearly two and a half hours just
  sitting talking to her and her talking to me and
  I said very little I think she probably got
  more benefit from that than me sitting filling in
  a form and making sure she was on the right
  antidepressant medication, you know basically. I
  think thats what a lot of the nurses do just go
  in and check that they are you know, people need
  to be listened to.

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Person Centred (3)

• I check out more, Ill check out is that okay
  with you? What do you want to speak about today,
  what issues are important and when the session is
  coming to an end I say what do you want to look
  at from here. I wouldnt normally have done that
  because people tend to often I dont think they
  know what you are there for and what you are
  trying to achieve. I cant just take it for
  granted without checking that out. and again we
  make our own assumptions about what we think
  might help, and that has changed because it is
  not always about what we think will help.. it is
  what the person thinks will help. I have to say
  I still make mistakes I shouldnt have done that
  I should have let them speak a bit more about
  that. but thats in my awareness now, thats in
  my awareness so when I go back again I can try
  and maybe rectify that. I hope you understand
  what I mean because its hard to explain

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Seeing the person with dementia differently

• Actually talking more to people with dementia and
  therapeutically tackling their issues - using
  less of other services
• Intense engagement - focused on the person and
  the relationship

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Enhancing Skills and increasing knowledge

• This is not about training nurses to be
  counsellors
• Its about professional development - building
  on and enhancing the skills of professionals
• Enabling them to identify therapeutic
  opportunities and respond in a meaningful way

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Whats the difference?

• Person Centred 11 interactions
• Listening actively
• Recognising emotional pain
• Respecting and recognising uniqueness
• Relationship focus
• More equal partnership

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Changing Lives (including their own!)
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Sustainability

• What next?
• Another cohort of 6 CMHNs has been recruited
• Learning set evolving into a Community of
  Practice

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The Last Word

• These nurses are giving back power to the
  person and helping them to see that the diagnosis
  is not the end it is only the beginning of
  something different
• Agnes

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More information about the approach

• dotweaks_at_nhs.net
• rjohansen_at_nhs.net
• Nursing Standard (2008) Oct 22nd
• Vol. 23, No.7, p.22-23
• Piramhids Website Case Study
• Connect in Care Website