MAF 2014


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  • Dame Cecily Saunders sums it up brilliantly she was the founder of the modern day hospice movement ---- sheWe must consider a common understanding of what palliative and end of life care mean. There are misconceptions amongst professionals and the public and this leads to fear and poor care practice
    Palliative care
    This is a holistic approach to both living and dying well.
    It is summed up well by the founder of the modern day hospice movement Dame Cecily Saunders ‘You matter because you are you… to the last minute of your life, and we will do all we can, not only to help you die peacefully but live until you die.’
    The challenge for people with dementia is when this approach becomes necessary. Some argue it is important throughout the illness as it adopts an open attitude towards death and dying and gives opportunities for discussions about dying and planning ahead. Other strengths of the palliative care model include impeccable management of pain and other symptoms and good ethical decision making.
    Other professionals believe that the person centred approach to care will be enough as it has similar core values. Also the diagnosis of dementia is difficult enough on its own without discussing dying.
    Palliative care is divided into to two types:-
    Specialist palliative care: is delivered by palliative care consultants and teams and concentrates on complex cases (difficult pain to manage etc.) This care will be managed by Hospices
    Generalist palliative care is copes with more straight forward cases and can be managed by hospitals, at home with community support and care homes. Specialist palliative care advice should be available but this is not always the case for people with dementia.
    wasn’t talking about dementia but cancer
  • There are three ways people with dementia die:-
    At any stage in the illness
    Of medical and mental causes at any stage when dementia will not be the primary cause of death
    The later stages of the illness - when there will be very little in the way of verbal skills, physical mobility will be very poor or non-existent, incontinence will be a feature, there will be difficulties with swallowing and drinking, skin and the immune system will be compromised making the person prone to infections. In addition the person will have very little residual capacity and unless an anticipatory care plan has been made the onus will be for decisions to be made by a proxy decision maker and the health care team
  • Assisted Suicide Bill
    The Bill currently making its way through the Scottish Parliament is the 3rd attempt to introduce assisted suicide into Scotland
    There are a number of issues for people with dementia
    Assisted suicide does not have the monopoly on dying with dignity; managing dying better should be and often is another option of dying with dignity.
    People who do not have capacity are excluded from the Bill. Capacity is essential as the person has to be able to administer the medication them self and have a full understanding of what they are doing. This is probably the most important consideration for people with dementia. Capacity and Incapacity are difficult areas to access. The person always has some residual capacity but because of communication difficulties it is often difficult assess. At what point can the person express the desire to live or die?
    This means that people with dementia would have to decide early in the illness that they would prefer the option of assisted suicide. This would be perhaps when they had a good quality of life. There would be a number of other things which could influence their decision such as not wanting to become a burden on their families etc.
    For people who lacked capacity to be included would be straying into Euthanasia
  • MAF 2014

    1. 1. Members Advisory Forum Apex International, Edinburgh 30 April 2014
    2. 2. Welcome Remarks Henry Simmons Chief Executive Alzheimer Scotland
    3. 3. First Session Innovations: Including the Dementia Dog project, the Dementia Circle initiative and wearable technology
    4. 4. finding, testing, sharing
    5. 5. tester feedback
    6. 6. a research project looking at the benefits that dogs can bring to people with dementia
    7. 7. with their families Dementia Dogs:
    8. 8. intervention dogs Intervention Dogs:
    9. 9. Valuable Digital Applications for people affected by Dementia
    10. 10. GSA student concepts Food for Thought Dementia - friendly dining memofy
    11. 11. Wearable technology:
    12. 12. Wearable technology:
    13. 13. GPS Trackers:
    14. 14. Questions: Q: What are the ethical issues involved in wearing tracking devices? Q: When does technology stop being an aid to independence and become a restriction on autonomy?
    15. 15. Coffee Break
    16. 16. Second Session End of life care: Ethics and rights of end of life care, and the implications of the Liverpool Care Pathway
    17. 17. ‘You matter because you are you…… the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die’ Dame Cecily Saunders Mission Statement St Christopher’s Hospice Palliative Care:
    18. 18. 1. With a medical condition that is not related to dementia at any stage of the illness 2. Complex mix of mental and physical problems where dementia is not the primary cause of death 3. Complications arising from end stage dementia ( Cox and Cook 2002) Three ways people die with dementia:
    19. 19. Liverpool care pathway: The Liverpool Care Pathway should have provided a safe place to die but did it? What should it be replaced with?
    20. 20. • Is this the only way to die with dignity? • Should people with dementia be excluded when they lack capacity? Assisted suicide:
    21. 21. 12 principles of a good death 1. to know when death is coming and to understand what can be expected 2. to be able to retain control of what happens 3. to be afforded dignity and privacy 4. to have control over pain relief and other symptoms 5. to have choice and control over where death occurs (i.e. at home or elsewhere) 6. to have access to information and expertise of whatever kind is necessary 7. to have access to any spiritual and emotional support required 8. to have access to hospice care in any location, not only in hospital 9. to have control over who is present and who shares the end 10. to be able to issue advance directives which ensure wishes are respected 11. to have time to say goodbye and control over other aspects of timing 12. to be able to leave when it is time to go and not have life prolonged pointlessly
    22. 22. Questions: Q: What do Members feel that Alzheimer Scotland should be looking to secure for people with dementia as part of end of life care? Q: What do you think Alzheimer Scotland’s position should be in relation to assisted suicide?
    23. 23. Lunch
    24. 24. Third Session Early diagnosis and awareness campaign
    25. 25. Barriers to getting a diagnosis • Fear • Stigma • Perceptions of dementia • Lack of knowledge of illness or help available • Response from professionals
    26. 26. Key strategic objectives • Develop and implement a campaign which promotes early diagnosis • Develop and test a new community model of support for people in the later stages of the illness
    27. 27. 5 Pillars model of Post Diagnostic Support
    28. 28. 8 Pillars of Community Support
    29. 29. Questions: Q: What help do people need to begin talking about dementia? Q: What key messages might an awareness campaign use to help people talk about dementia?
    30. 30. Coffee Break
    31. 31. Fourth Session Dementia friendly communities: Growth, expectation, impact and effectiveness
    32. 32. Motherwell example:
    33. 33. A dementia friendly community is composed of the whole community - shop assistants, public service workers, religious groups, businesses, police, transport and community leaders - who are committed to work together and help people with dementia to remain a part of their community and not become apart from it. This involves learning about dementia and doing very simple and practical things that can make an enormous difference. Motherwell definition:
    34. 34. Motherwell Town Centre – Dementia Friendly Community 37 Motherwell materials: • Developed campaign materials, flyers, introduction letters, information packs. Our USP: Be the first! • Incorporated Alzheimer Scotland Brand • Matched Alzheimer Scotland’s ambition to have Dementia on the High Street. Credentials & Credibility • “Dementia is Everyone's Business” Customer Care • “Everyone knows someone with dementia” Relationship • ‘Tips for Shops and Businesses’ Quality product • Developed our “commitment” format and Lanarkshire Dementia Friendly Community board. Engagement & Publicity (Win/Win)
    35. 35. • Over 1000 people have received hints and tips cards • Awareness Training with 210 North Lanarkshire Fire fighters • Awareness Training with 80 Police Officers – Community, Specials and Probationers • Awareness Training with 10 Motherwell Boots Staff • Motherwell Boots issue Alzheimer Scotland Helpline Cards in prescription bags • Environmental Audits carried out in 6 premises inc. Boots and North Lanarkshire Health Centres • 132 NHS staff in North Lanarkshire Health Centres trained at Informed Level (inc 4 GPs) • Shared our learning with Alzheimer Norway – hints and tips cards are now translated into Norwegian Did we make a difference?
    36. 36. Dementia friendly communities:
    37. 37. Dementia Friends
    38. 38. Dementia Friends
    39. 39. Dementia Friends What is a Dementia Friend? A Dementia Friend learns a little bit more about what it's like to live with dementia and then turns that understanding into action - anyone of any age can be a Dementia Friend. From helping someone to find the right bus to spreading the word about dementia on social media, every action counts.
    40. 40. Dementia Friends
    41. 41. Dementia Friends Scotland: • Appoint Dementia Friends Programme Manager – Anne McWhinnie • Launch during Dementia Awareness Week • New website and social media sites (holding website in place for 7th May) • Commence online and face-to-face training • Dovetail with Dementia Friendly Community work and toolkit…………………………….
    42. 42. Dementia Friends Scotland: What next? •The key to success is to find ways to carry on the conversation with our Dementia Friends after their awareness training. •Convert ‘Friends’ to ‘Members’ •Sign up to e-News •Encourage fundraising •Convert to volunteers •Share their stories •Ask them to recruit more Dementia Friends
    43. 43. Questions: Q: What does a dementia friendly community mean to you? (How would it work best in your community?) Q: What support do you think you need to make dementia friendly communities more effective?
    44. 44. Closing Remarks Henry Simmons Chief Executive Alzheimer Scotland
    45. 45. Safe journey home!