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Planning for the Future when you have Dementia
Planning for the Future When you have Dementia
Samantha Taylor, Information and Helpline Manager, Alzheimer Society of Ireland
Marie Lynch, Programme Development Manager, Irish Hospice Foundation
Planning for the Future when you have Dementia
Workshop Plan
Planning for the Future when you have Dementia
1. Introduction and Background Marie 2. Why it is difficult to Plan? Marie 3. Why Plan for the Future? Samantha 4. Discussion There will be interactive discussion sessions after input 2 and input 3.
Introduction and Background
1. Key Facts about Dementia
2. Future Planning and Palliative care for people with dementia
3. Irish projects and policy work in dementia and palliative care
Planning for the Future when you have Dementia
Key Facts Numbers of people with dementia in Ireland
42,000 Numbers of people with dementia in residential care settings
14,200 Projection of people with dementia 2043
126,000 Cahill et al 2012
Deaths in UK caused by dementia
1 in 7Pace 2013 Planning for the Future when you have
Dementia
Benefit of Palliative Approach for people with Dementia
PHILOSOPHY OF CARE
Focus on personal autonomy
Recognition of support that staff need to deliver quality end of life care
Recognition of anticipatory and ambiguous loss and bereavement – people with dementia and families
Developing this approach as a baseline, will support the care that all people with life limiting disease will receive
Planning for the future
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
Planning for the Future when you have Dementia
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’
Planning for emergencies & getting on with living
Peace of Mind
Reducing Anxiety
BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS
REF: NCPC UK ‘Difficult Conversations’
Planning for the Future when you have Dementia
‘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’
Knowing what to expect at the very end
‘There was always someone I could phone, for example with the syringe
driver…. they reassured me’
2012
2012
2013
2001
2011
REPORTS
Planning for the Future when you have Dementia
Why is it difficult to plan ahead…..
….. When you have dementia
Planning for the Future when you have Dementia
From perspective of
People with dementia
Family carers
Health care staff
Challenges of planning ahead
Planning Ahead All stages
All settings Person with dementia, their family, service providers
Planning for the Future when you have Dementia
Perspective of person with dementia
Planning for the Future when you have Dementia
Perspective of person with dementia
Planning for the Future when you have Dementia
Perspectives of carers
Planning for the Future when you have Dementia
Not prepared for the end stage Distressed as pain not assessed /
difficult to assess Stress with transitions….& place
of care and Issues relating to food and drink More focus on spirituality needs
at end of life Traditions and culture Being a family member or carer?
Perspective of Carers
Planning for the Future when you have Dementia
Ref: Alzheimers Canada 2013 http://www.alzheimer.ca
‘I was losing my mother and trying to find her. The biggest
loss was when I realised I could not bring her back.
Physically she was my mother, but mentally she was gone.
You have to greive each one of the losses. Just feel the loss
and move on’
Marilyn Preston, caregiver, Victoria Canada
Perspective of Health Care Staff
Planning for the Future when you have Dementia
Initiating discussions
Supporting families
Documentation
Clare Mental Health Service Palliative care and dementia project 2011
In general do you talk to patients about death and dying
/ relatives about death and dying
Planning for the Future when you have Dementia
Discussion: Dealing with reality
1. Set up into groups of two or three people
2. Think of an example where an unanticipated situation arose when caring for a family member/ person with dementia that brought up issues relating to end of life care.
3. Discuss the response from
you /your family/your team
4. What learning/recommendations can you draw from this situation.
Feedback/Examples
• What have you learnt from your discussion
• What practice have you/would you introduce to support future planning
• What resources would help you
Planning early is important
because it lets you:
– express wishes & preferences;
– put your affairs in order;
– reduce anxiety or uncertainly;
– help your family
– focus on living well.
Key elements
• Information
– timely
– relevant
– accurate
• Emotional support
• Good signposting
• Help to navigate system
What are key steps for planning?
• 5 Steps to consider:
– financial affairs
– legal affairs
– health care needs.
– what happens after a person dies
– talking to family about the plans
Resources
Discussion
• Set up into groups of two or three people
• Discuss
– What steps do you think you would take to plan for the future if you have a diagnosis of early stage Alzheimer’s.
– What would help you to plan
– What do feel would be a barrier
Contact details
• The Alzheimer Society of Ireland
– National Helpline: 1800 341 341
– Website: www.alzheimer.ie
• The Irish Hospice Foundation
– Phone: 01 679 3188
– Website: www.hospicefoundation.ie
• Think Ahead: Speak for Yourself
– Website: www.thinkahead.ie
Resources: http://hospicefoundation.ie/what-we-do/palliative-care-for-all/dementia/
• How do I plan for the future
Alzheimer Society of Ireland
• Changing Minds Programme 2013 - 2016
Promoting excellence in end of life care for people with dementia Irish Hospice Foundation.
• Planning for the Future Project Report
– Symptom control
– End of life care page
HSE Athy, Co Kildare
Thank You
Samantha Taylor
www.alzheimer.ie
Marie Lynch
www.hospicefoundation.ie
