Planning for the Future when you have Dementia

Transcription

1

2 Planning for the Future When you have Samantha Taylor, Information and Helpline Manager, Alzheimer Society of Ireland Marie Lynch, Programme Development Manager, Irish Hospice Foundation

3 Workshop Plan 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.

4 Introduction and Background 1. Key Facts about 2. Future Planning and Palliative care for people with dementia 3. Irish projects and policy work in dementia and palliative care

5 Numbers of people with dementia in Ireland 42,000 Key Facts Numbers of people with dementia in residential care settings 14,200 Projection of people with dementia ,000 Cahill et al 2012 Deaths in UK caused by dementia 1 in 7Pace 2013

6 Benefit of Palliative Approach for people with 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

7 BENEFITS PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS Making Informed Decisions We were prepared for the situation that hit us Reducing Anxiety 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 There was always someone I could phone, for example with the syringe driver. they reassured me we thought it would be easier to manage if we d talked about it in advance Peace of Mind 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 REF: NCPC UK Difficult Conversations

8 2012 REPORTS

9 Why is it difficult to plan ahead.. From perspective of People with dementia Family carers Health care staff.. When you have dementia

10 Challenges of planning ahead Planning Ahead All stages All settings Person with dementia, their family, service providers

11 Perspective of person with dementia

12 Perspective of person with dementia

13 Perspectives of carers 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?

14 Perspective of Carers 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 Ref: Alzheimers Canada

15 Perspective of Health Care Staff Initiating discussions Supporting families Documentation

16 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

17 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.

18 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

19

20 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.

21 Key elements Information timely relevant accurate Emotional support Good signposting Help to navigate system

22 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

23 Resources

24 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

25 Contact details The Alzheimer Society of Ireland National Helpline: Website: The Irish Hospice Foundation Phone: Website: Think Ahead: Speak for Yourself Website:

26 Resources: How do I plan for the future Alzheimer Society of Ireland Changing Minds Programme 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

27 Thank You Samantha Taylor Marie Lynch