Changing Minds: An Overview

SLT Dysphagia SIG study dayFriday 24th July

St Vincents HospitalSarah Cronin MSc BSc

MIASLTDementia Development

OfficerIrish Hospice Foundation

Presentation Outline BACKGROUND

• Irish Hospice Foundation• Policy Context • Rationale

CHANGING MINDS PROJECTS

• Resources• Education• Service Development • Engagement

IHF Vision & MissionOur Vision is that no one should face death or bereavement without the care and support they need

Our Mission is to achieve dignity, comfort and choice for all people facing the end of life. We do this by addressing, with our partners and the public, critical matters relating to death, dying and bereavement in Ireland

IHF Programmes

• Palliative Care for All

• Primary Palliative Care

• Hospice Friendly Hospitals

• Bereavement Education ,Training and Support

• Children's Programme

• Forum on End of Life • Fundraising

Education

Grant programmes

Innovation

Awareness raising

Advocacy

What is good end-of-life care?

When I receive good end-of-life care…• I will be respected for who I am, and I will be at the centre of all decisions about my care. I will have confidence in the quality of the care provided to me.

• I will be prepared for what lies ahead.• I will have choice, where possible, in my preferred place of care and have the supports I need for a good death.

• I will have comfort and dignity in my care as death approaches.

• I will know that my family and those important to me will be supported and cared for after my death.

Setting the Scene: Dementia in Ireland

Dementia Palliative Care in Ireland

People with dementia – what the research tells us…

• Dementia is not recognised as a progressive/ terminal 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

residential care settings with people with dementia requires an integrated an interdisciplinary approach (Cahill et al, 2012 :ASI and IHF, 2012)

End of life care needs of people with dementia

Care Transitions

Multidisciplinary team involvement

Pain & other

Symptoms

Communication

Loss and bereaveme

nt

Good end of life care for people with dementia Requires additional emphasis

1. Communication skills with people with dementia and families due to cognition, capacity, lack of diagnosis

2. Assessment of end of life symptoms due to diminishing ability to communicate and co-morbidities

3. Wider MDT involvement due to complex symptoms & range of specialist involvement

4. Increase in acute events/transitions for continuity of care transitions

5. Bereavement interventions Anticipated loss and longer trajectory

Challenges of providing a Palliative Care Approach

PALLIATIVE CARE APPROACH All stages

All settingsPerson with dementia, their family, service providers

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What is palliative care for people with dementia?

PHILOSOPHY OF CARE Recognition of anticipatory and ambiguous

loss and bereavement – people with dementia and families

Planning for the future Recognition of support that staff need to

deliver quality end of life care Ascending level of specialisation –

approach, generalist, specialist

SERVICE INTERVENTION Assessment and treatment of pain &

symptoms (under-detected in people with dementia)

Advice re hydration & nutrition Support decision making re potentially

burdensome interventions

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What does it involve?“ Palliative dementia care is that which actively treats distressing symptoms (physical and / or psychological/ emotional) to optimise Quality of Life of the person with dementia and their family knowing that the underlying cause cannot be cured”

(ACH, Australia, 2009).• Supporting the person with dementia and family to:

• Address and relieve pain ,distress and discomfort associated with advancing dementia

• Inviting them to participate in making decisions about future care needs and where it is best delivered.

“The aspirational aim will always be to maintain personhood and to enable the person to live well. When, then, it comes to dying, the aim should be for death to occur with dignity, without suffering or distress; it having never been hastened or postponed in-keeping with the principles of palliative care” (Hughes, 2013)

Components of Dementia Palliative Care (ASI& IHF, 2012)

Responsive Services

Life cycle approach

Person centred services

Building capacity

Timely Information

needs

Integrated care

pathways

Shared expertise

Making Informed Decisions

‘we thought it would be easier to manage if we’d talked about it in advance’

We were prepared for the situation that

hit us

I’m happy that mums wishes will be carried out and that its all so comfortable and that she is comfortable with it too’

Getting on with living

The thing is once you’ve

spoken about these things (as hard as it might be) you can put them away and

focus on enjoying things’

Peace of MindReducing Anxiety

BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS

Source: NCPC UK Difficult Conversations

Planning for emergencies

Knowing what to expect at the very end

I think I’d have been a better carer if I’d

had more information

There can be a lot of friction and some families can bicker – helpful to have someone help with discussions and making plans in advance

There was always someone I could

phone, for example with the syringe driver….

they reassured me

BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS

Source: NCPC UK Difficult Conversations

Summary Palliative care is part of dementia care and should begin at the time of diagnosis

Requires collaboration across teams and settingsTiming of intervention paced/guided by people with dementia

KEY ISSUESPlanning and preparationNeed for continued supportRecognition of protracted lossesCatering for cultural and spiritual needsContinuity of careStaff training

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Changing Minds: Three Outcomes

Palliative care for

people with dementia

will be prioritised in all care settings; and more

people will be

supported to die well at home

Better end of life care

in residential

care settings for

older people with a focus on

people with dementia

Increased public

awareness on death

and dying, with more

people including

those with dementia,

engaging in early

advance planning

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

Resources

Resources – People with dementia & families

Resources - FamiliesA new education programme of four 90-minute sessions, run over four consecutive weeks, for family members (relatives and friends) of residents. 1. When someone you care about

is in a nursing home 2. How to have a good visit with a

relative/friend with dementia 3. Family involvement in thinking

ahead and decision making in end-of-life care

4. When someone you love/know is dying

For info: claire.banks@hospicefoundation.ie

Resources for Staff

Facilitating discussion on future and end of life care

Advance Care Planning and Advance Healthcare decisions

Medication management

Ethical decision making

Nutrition and Hydration

Loss and Grief in people with dementia and their carers

Pain assessment

PALLIATIVE CARE AND DEMENTIA : GUIDANCE DOCUMENTS – 2015/2016

Aim: to inform and guide healthcare staff initiating and facilitating discussions relating to future and end-of-life care with people who have dementia.

-5 key considerations which inform best practice in communicating with a person with dementia- 4 areas of guidance for staff

Education

National Seminars

4 regional seminars

Limerick Dundalk

Waterford Mullingar 3 November

20151 National

Conference 2016

What Matters To Me

A one-day workshop which aims to improve end-of-life care in hospitals/residential care settings by enhancing communication skills so that staff at all levels are better able to engage in discussions with residents, throughout their time in the hospital/care home, about what is really important to them.

Workshop topics include:

• Applying the principles of a hospice approach • Understanding the issues of ongoing care after death • Identifying ways to improve communication in end-of-life care with residents and

families• Applying open and sensitive communication to end of life care.

Education: Training Days

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For info: claire.banks@hospicefoundation.ie

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Workshop topics: End-of-life care, communication and

person-centredness Communication – what helps and

hinders The impact of dementia on

communication ability Models of dementia care and how to

communicate Tips and techniques for

communicating with people with dementia

Training Days

Communicating with People with DementiaA new half-day workshop for staff working in residential care

For info: claire.banks@hospicefoundation.ie

Service development

Case studies understanding how to support people with dementia to live well and die at home

Analysis of those who receive IHF night nursing service

Service Development/ Dying at home

2007 2008 2009 2010 2011 2012 2013 20140

102030405060708090

100

# people with dementia referred to IHF night nurs-

ing service

Axis Title

SUPPORTING HOME DEATHS FOR PEOPLE WITH DEMENTIA

EOLC dementia pathway acute hospital

Good Neighbour scheme – advanced dementia

Communicating end of life and dementia residential care

Understanding the role of SPC in supporting dementia

TALKING MATS – speech and language therapist intervention

Case studies to understand how palliative care helps people with dementia live at home

Service Development/GRANTS

www.hospicefoundation.ie

Onsite facilitation Individual tailoring for quality improvement

EOLC toolkitEducationEnd of life reviews

Telephone support

End of life toolkitOnline learning and

supportCommunity links

Service Development / RCC

Target 350 Residential Care Centres

South, Dublin, MidWest & North West

Resources for Residential Care Centres

• End-of-Life Care Toolkit• Excellence in end-of-life care• End-of-life care policies, procedures

and guidelines• On admission to residential care• Communicating in end-of-life care• Assessment, care planning and

advance care planning• Supporting families• Recognising when a person is dying• Caring in the last days of life• Care after a person’s death• Supporting staff• Design and dignity

Resources cont’d• On-line support network

• E-bulletins• Webinars• Questions forum• Contact details

• End of life spiral symbol• Information booklets/leaflets• Workshops

Workshops• Creating a Vision for End-of-Life Care

• examine end of life, dying and death from a personal perspective, a client centred perspective and an organisational perspective.

•  discuss, compare & contrast end of life, dying and death and associated organisational structures and processes in their centre; for residents with and without cognitive impairment/dementia.

• Compassionate End-of-Life (CEOL) Reviews• give staff the opportunity to review and reflect on care provided to a

resident who has died.  • help staff recognise and honour what the team and individuals did well

and to look at ways in which care could be improved, at an individual level, a team level, and an organisational level.

• Change Management• give staff insight into change management principles and knowledge on

how to make successful change.• Apply a change management model to centre specific change projects

Think Ahead is an idea that came from people like you across Ireland. Regardless of your age, stage of life or level of health, it encourages you to:

THINK about how well those close to you would know or understand your wishes if a time came when you could not speak for yourself because of illness.

TALK about these wishes with those close to you and with professionals such as GP, solicitor, accountant.

TELL the most relevant people in your life about your wishes and record them so that they can be available if at some stage, for whatever reason, you are unable to speak for yourself.

RECORD AND REVIEW

Public Engagement

“ Professional carers will never fully understand the light and shade, the hope and despair and the frustration and joy of each family members relationship with a person who has dementia. The best they can do is develop in partnership with families a mutually agreed plan that includes the very best physical care, thoughtful and sensitive social support and emotional and spiritual space for each unique passing”

(Hudson, 2003)

Acknowledgements

Thank you and QuestionsFor more information • Sarah Cronin• sarah.cronin@hospicefoundation.ie

Ph: 01 6730067

People with dementia and carers who have contributed and advised IHF

IHF Changing Minds Team Project Advisory and Governance Groups Atlantic Philanthropies