1. Why involve and educate family members? Jenny Henderson

2. Alzheimer Scotland palliative care projects - the story so far… Lighting Up Lives Report 2004 - 2006 The Beyond Barriers Project Winner of Principles into Practice Award 2009  Palliative Care Initiative 2009 /2010

3. Why have we made family members a central part of all our palliative care and dementia courses Why have we made family members a central part of all our palliative care and dementia courses ?

4. Palliative care focuses on the person Palliative care focuses on the person and their family Applies an holistic approach Meeting:- Physical Practical Functional Social Emotional Spiritual Needs of people and carers facing progressive illness and bereavement

5. Caring Caring does not cease when a relative moves into long stay care. Neither do the stresses of caring cease.

6. Incapacity  Impacts on communication  Impacts on understanding the person’s wishes  Impacts on providing choice  Impacts on planning care  Impacts on making ethical decisions

7. The ethical burden of carers ‘Despite the fact that many carers become well informed about dementia and its progression, few it seems are well prepared for having to make end of life decisions. Many carers feel supported by professionals in practical ways but often feel alone and un supported when it comes to making ethical decisions’ (Baldwin et al 20040

8. Relatives’ feelings 11/25 11/25 of the relatives had come to terms with their relative going into long term care: ‘I am more used to it now, I used to cry all the way home’ 14/25 felt guilt, sadness or anger ’It feels just as raw as it did the day he went in three and a half years ago’ Henderson J Lighting up lives http://www.alzscot.org/pages/policy/palliativecare.htm

9. How involved did families feel with the care of their relative ? 14/25 were involved in care, 2 in practical ways 5/25 would have liked to have been more involved ‘I feel a bystander’ ‘I feel like a stranger visiting’ 6/25 did not want to be involved Henderson J Lighting up lives http://www.alzscot.org/pages/policy/palliativecare.htm

10. Information given to relatives 10/25 thought they had sufficient information 6/25 thought they had sufficient information when they asked 4/25 felt they didn’t get the whole story ‘they always seem cagey I sense it is not the whole story’ ‘ I feel they are holding something back’ 5/25 felt they were not kept informed Henderson J Lighting up lives http://www.alzscot.org/pages/policy/palliativecare.htm

11. The relatives were also asked if they shared how they were feeling with the care staff The relatives were also asked if they shared how they were feeling with the care staff 15 out of 25 relatives said they did not share their feelings with care staff, ‘No they have enough to do but sometimes I leave worried and upset’ ‘Never discussed my feelings with the staff but they have never asked sometimes they put their arm round me and are friendly’ ‘No I don’t like to bother them’ Henderson J Lighting up lives http://www.alzscot.org/pages/policy/palliativecare.htm

12. Creating a safe place for people to learn blossom grow and branch out

13. Remaining involved Recognise the families role and expertise Enjoy visiting Help with care as appropriate Communicate with staff Have support and information

14. ‘O wad some Power the giftie gie us To see oursels as ithers see us!’ English translation ‘ O would some Power the gift to give us To see ourselves as others see us! ’ To a Louse Robert Burns

15. The rewards of relative involvement  Staff had much to learn from relatives  Relatives’ views have been a catalyst for many of the changes the care homes have made  Staff have gained an increased understanding of relatives’ needs  to think and put myself in relatives shoes’ ‘having relatives on the course has been enlightening, interesting and gave me time staff member

16. The challenges of involving relatives…  encouraging relatives to take part  Unsure of the content of the course  Talking about death and dying  Staff insecurities

17. The Rewards… enabling change in practice  Spirituality  Activities  Communication  Relatives needs  Management of pain  End of life care  Planning care

18. What difference has it made in practice ? Developing a palliative care approach Planning care Understanding relatives needs Developing communication skills Spiritual needs Affirming life Understanding the challenges of end of life care Empowering families

19. Most of all we have shown :- Most of all we have shown :- it is possible for relatives and staff to work together it is possible to tackle difficult and sensitive subjects together together we can make changes in care practice to develop a palliative care approach to care for people with dementia and their families

20. Thinking outside the box… Share examples of good practice of relative involvement What else could you achieve? Give one key message on what would make a difference for you to develop relative involvement