Dying to talk -facilitating discussions on future and end of life care with people who have dementia
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Presentation about guidance document for healthcare staff on having conversations with people with dementia about their future and end of life care
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Dying to talk -facilitating discussions on future and end of life care with people who have dementia
- 1. DYING TO TALK – FACILITATING DISCUSSIONS ON FUTURE AND END-OF- LIFE CARE WITH PEOPLE WHO HAVE DEMENTIA Sarah Cronin, Marie Lynch, Deirdre Shanagher, Carmel Collins, Lasarina Maguire, Dr Suzanne Timmons, Jean Barber and Cecelia Hayden. Celebrating Leadership and Innovations in Older People’s Services Dublin Castle 12th April 2016
- 2. Outline of Presentation • Dementia in Ireland • What do people with dementia say about end- of life- care? • Guidance Document development • Facilitating discussions on future and end-of-life care with a person with dementia 2
- 3. Setting the Scene: Dementia in Ireland 3
- 4. People with dementia – what the research tells us… • Dementia is not recognised as a progressive/ life-limiting illness • Progression varies significantly from person to person • People with dementia less likely to be referred to Specialist Palliative care • Less likely to be given pain relief • Palliative care needs poorly recognised and prioritised in healthcare settings • Can be more likely to undergo burdensome treatments • Training , knowledge and education of staff working in care settings with people with dementia requires an integrated and interdisciplinary approach 4
- 5. What people with dementia say about end of life care: RONAN SMITH Plan for the probable, work for the possible, hope for the future Hope that people don’t have to feel ashamed or awkward about a dementia diagnosis…. life isn't over 5
- 7. Background: Practice tools, service models, primary palliative care Adaptation of Hospice Friendly Hospital resources, development and education for residential settings Roll out and adaptation of Think Ahead STRATEGIC ENGAGEMENT 7
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- 11. 4 Guidance Areas 1. Communication Skills 2. Capitalising on informal opportunities 3. Facilitating discussions 4. Hosting formal family meetings 11
- 12. 8 Tips for Effective Communication 1. Adopt a person centred approach to communication 2. Connect with the person 3. Consider the communication environment 4. Be aware of your own communication style and approach 5. Use active listening 6. Use simple language 7. Focus on one question at a time 8. Clarify information and check for understanding 12
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- 14. Acknowledgements Thank you and Questions For more information: Sarah Cronin Dementia Development Officer sarah.cronin@hospicefoundation.ie People with dementia and carers who have contributed and advised IHF IHF Changing Minds Team Project and Expert Advisory and Governance Groups Atlantic Philanthropies 14
Editor's Notes
- Good afternoon everyone, I am delighted to be here representing the Irish Hospice Foundation today and would like to sincerely thank the organisers of this event for inviting me to speak with you. My background is as a Speech and Language Therapist worked for 10 years with adults with ID , many of whom had a diagnosis of dementia Delighted to hear of the innovative and dynamic service initiatives going on across the country in older persons services and I hope to be able to add to and inform the discussions relating to EOLC for people with dementia.
- We know that around 48000 people are living with dementia –the ratio of women to men is almost 2:1. Of these people there are 4000 people under the age of 65 The number of people living with dementia is set to double in the next 20 years and treble in the next 35. Dementia is one of the biggest global health priorities of the current generation. Demanding spotlight and attention to develop appropriate and responsive services for this generation and generations to come.
- This is compounded by a lack of public understanding and lack of willingness to discuss death and dying in society can create a double stigma. There has been huge developments in the past few years in terms of analysing staff training needs and developing a range of training options for healthcare staff and this is a very welcome development.
- Ronan Smith is 57 years old and was diagnosed last year with early onset dementia. He has a background both in law and in theatre, spending most of his career as an actor and director. Ronán has been involved in the dementia arena for over 30 years and cared for his father who had dementia in the 1980s and has since gone on to live with dementia himself. He is a member of the Irish dementia Working Group and is pictured here at a seminar on dementia palliative care which was held in Mullingar late last year. His mantra which he lives by is ‘plan for the probable, work for the possible and hope for the future. There is a need to create early and repeated opportunities for people with dementia to discuss their care preferences and end of life care wishes. We should always work to support the person where they are at and never lose hope. Hope is a key factor in keeping healthcare staff resilient and compassionate in their roles.
- One of the highlights of my time with the Irish Hospice Foundation to date has been meeting Kathy Ryan who is here with me today. Kathy is a 55 year old woman who lives in Tipperary with her two boys. She was diagnosed with dementia at the age of 53 and is a powerful self-advocate. Kathy is also the daughter of someone living with dementia. Some of you may be familiar with Kathy’s story through her advocacy work with the Irish Dementia Working Group. Kathy has been involved in reviewing some of the materials we have developed for people with dementia, their families and staff. On one of my visits to Kathy, she spoke passionately with me about supporting carers to communicate in a more effective way with people with dementia in a way which involves maintaining a connection to the person with dementia rather than correcting the person. Out of these conversations, I suggested we make some videos to ensure that Kathy’s messages were put into the public arena. I am delighted to present you with a short clip of one of these videos which is about the need to Think Ahead.
- As you can see, providing end –of –life care for people with dementia requires additional emphasis. The IHF embarked on an ambitious 3 year programme in 2013 called Changing Minds. The overall aim of this programme is to enable more people, particularly those living with dementia to live and die with dignity at home or in residential care settings.
- One of the outputs of the programme is seven guidance documents on different aspects of dementia palliative care. These are aimed at healthcare staff. Each of these have an accompanying factsheet to act as a support for healthcare staff. Each of these were developed by an expert advisory group and have key considerations to inform good practice followed by guidance areas and resources for staff. Three of these were developed in the Irish Hospice Foundation and they are:…Two of these are out for public consultation at the moment and we would welcome your views – Loss and Grief in Dementia and Advance Care Planning and Advance Healthcare Directives with a person with dementia. Four of the guidance documents were developed by a team of researchers in UCC and will be available on the website by the End of May. I’m going to focus on the first guidance document ‘ Facilitating discussions on future and end-of-life care with a person with dementia’ for the remainder of the presentation.
- The first guidance document serves as foundation knowledge for subsequent guidance documents in the series and gives a range of tips and prompts on communicating with a person with dementia.
- The 5 key considerations should be applied as foundation knowledge for all healthcare staff supporting a person with dementia. Recognise that communication with a person is always possible – there is a need to be more flexible and creative in our approach to communication and to try out different approaches to interact, connect and support the person with dementia to communicate. Develop knowledge about the progression of dementia and key triggers for end-of-life discussions. Staff need to have a good understanding of the clinical progression of dementia as well as being informed of the events or transitions that might prompt or trigger EOLC discussions – time of diagnosis, change in care setting, care plan review or healthcare events such as a decline in the person’s condition, complex symptoms or consideration on the need for further medical treatments. Plan future care to optimise comfort – Having early and repeated discussions can ensure that comfort care is prioritised throughout the person’s journey with dementia. This can avoid overly burdensome/ aggressive treatments and/ or transfer to hospital as a person nears the end of their lives. While this is recognised as good practice for the person with dementia, it is also something which can lead to better outcomes for families in terms of bereavement. Promote personhood throughout the person’s journey – people with dementia should be afforded choice, dignity and respect and kindness by all people they encounter 5. Recording future wishes when they are expressed – this may be using a Citizen led tool such as Think Ahead or it may be in a care plan and needs to be regularly reviewed.
- The literature reviews identified these 4 areas where staff would benefit from guidance: They are: Communication skills such as person centred communication, use of short sentences and a calm tone of voice ,using active listening techniques and using communication aids as appropriate. 2. Capitalising on informal opportunities – opportunities to address concerns relating to a person’s health or future care often arise as part of a natural conversation in an everyday context – it is vital that these are recognised as opportunities and staff are confident in how best to respond and explore concerns with the person. The document uses an approach called the AFIRM approach which was developed in Australia to guide these conversations and there are 3 case studies used to demonstrate how to use this in practice. 3. Facilitating discussions which should be a natural extension of care and part of regular care planning. - Useful ways to incorporate this into practice include reflecting with other team members where opportunities arise to optimise discussions and reviewing documentation so that discussions take place, are recorded and followed through 4. Hosting formal family meetings : there is a need to recognise prompts that signal the need for family meetings to include at time of diagnosis, change in care setting from hospital to residential care or a]when there’s a change or decline in a persons condition. The document outlines an 8 stage approach to facilitate a formal discussion on future and end-of-life care.
- Use of a total communication approach For people with advanced dementia who may communicate in more subtle ways and be reliant on staff to know them really well. Supporting people with advanced dementia to communicate requires a collaborative approach between the staff team, the family and the person themselves and sharing observations and key ‘nuggets’ of information that work well to support the person Connect don’t correct! We can get very focussed on information and facts and whether they are correct or incorrect. Try to enjoy the moment and the interaction. There is a very strong link between positive friendly interactions and improved mood in people with dementia. Focus on feelings. Think about the environment – light, noise, activity levels, seating and communication resources Be aware of your own communication style and approach – people with dementia may take a lot of meaning from your nonverbal communication and how you engage. It is important that you reflect upon how you interact and support people to be able to be a responsive communication partner. Active listening – fully attending to the person, giving them the time they need to respond and employing conversational cues like ‘mmm’ Use simple language – avoid jargon, point/ demonstrate/ gesture to support your verbal language. Provide support and affirmation if a person gets stuck. Visual supports may be useful. Focus on one question/ idea at a time. Open ended questions and multiple choice questions require a person to retain quite a lot of information which is a challenge. It may be more useful to ask a series of closed questions. Don’t focus on facts all the time / make conversations feel like a quiz or a test. Clarify information and check for understanding – don’t pretend to understand when you don’t.
- I’m going to leave the last word to Kathy and this is part of the clip you saw earlier where Kathy talks about having the conversation with someone and capitalising on naturally occurring moments.