Members Advisory Forum Apex International, Edinburgh

30 April 2014

Welcome Remarks

Henry Simmons Chief Executive

Alzheimer Scotland

First Session

Innovations:

Including the Dementia Dog project, the Dementia Circle initiative and wearable

technology

finding, testing, sharing

tester feedback

a research project looking at the benefits that dogs can bring to people with dementia

with their families

Dementia Dogs:

intervention dogs

Intervention Dogs:

Valuable Digital Applications for people affected by Dementia

GSA student concepts

Wearable technology:

Wearable technology:

GPS Trackers:

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?

Coffee Break

Second Session

End of life care:

Ethics and rights of end of life care, and the implications of the Liverpool Care Pathway

‘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:

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:

Liverpool care pathway:

The Liverpool Care Pathway should have provided a safe place to die but did it? What should it be replaced with?

• Is this the only way to die with dignity?

• Should people with dementia be excluded when they lack capacity?

Assisted suicide:

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

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?

Lunch

Third Session

Early diagnosis and awareness campaign

Barriers to getting a diagnosis

• Fear

• Stigma

• Perceptions of dementia

• Lack of knowledge of illness or help available

• Response from professionals

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

5 Pillars model ofPost Diagnostic Support

8 Pillars of Community Support

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?

Coffee Break

Fourth Session

Dementia friendly communities:

Growth, expectation, impact and effectiveness

Motherwell example:

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:

Motherwell Town Centre – Dementia Friendly Community

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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)

• 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?

Dementia friendly communities:

Dementia Friends

Dementia Friends

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.

Dementia Friends

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…………………………….

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

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?

Closing Remarks

Henry Simmons Chief Executive

Alzheimer Scotland

Safe journey home!