16. 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?
18. Second Session
End of life care:
Ethics and rights of end of life care, and the
implications of the Liverpool Care Pathway
19. ‘You matter because you
are you……..to 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:
20. 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:
21. Liverpool care pathway:
The Liverpool Care Pathway should have
provided a safe place to die but did it?
What should it be replaced with?
22. • Is this the only way to die with dignity?
• Should people with dementia be
excluded when they lack capacity?
Assisted suicide:
23. 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
24. 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?
27. Barriers to getting a diagnosis
• Fear
• Stigma
• Perceptions of dementia
• Lack of knowledge of illness or help
available
• Response from professionals
28. 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
32. 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?
36. 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:
37. 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)
38.
39. • 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?
43. 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.
45. 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…………………………….
46. 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
47. 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?
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