Dementia friendly communities - my talk this evening

Where are we now with

‘dementia friendly

communities’?Dr Shibley Rahman

Public talk given at

BPP Law School on 10 June 2015

1. Definition

2. Considerations

3. Alzheimer’s Society (current framework)

4. Some background (England)

5. DFCs (Australia)

6. DFCs (Japan)

7. Key developments in English dementia/strategy

8. Dementia Alliance International

9. Language

10. Global background

11. Dementia Friends: an example of a social movement

12. Dementia friendly cities

13. Dementia friendly hospitals

14. Rights based approaches

15. Businesses and ‘Nudge’

16. Dementia friendly environments

17. Leisure

18. Education

19. Research

20. Conclusion

1. Definition

“A dementia-friendly community is one in which

people with dementia are empowered to have

high aspirations and feel confident, knowing

they can contribute and participate in activities

that are meaningful to them.”

(Alzheimer’s Society, August 2013)

“Dementia capable” (Lim and Lewis, The Gerontologist, 2015, Vol. 55, No. 2, 237–244)

• “It can also be interpreted as an ability (a

combination of staff knowledge, skills, and

competency as well as available programs and

services) to fulfill the needs of PWDs and their

caregivers.”

• “The exact term “dementia capable” first

appeared in the Recommendations of the Public

Members of the Advisory Council on Alzheimer’s

Research, Care, and Services (HHS, 2012a).”

2. Considerations

• Cultural / ethnic

• Funding structures of healthcare

• Hospital v home

• Levels of public education

• Willingness of volunteers to spread message

• Professional attitudes

• Authenticity of stakeholder involvement

3. Alzheimer’s Society current framework

Building dementia-friendly

communities: A priority for everyone

• “Less than half of the respondents to the

survey think their area is geared up to help

them live well with dementia (42%).”

• “More than half of UK adults surveyed in the

YouGov poll feel that the inclusion of people

with dementia in the community is fairly bad

or very bad (59%).”

Recommendations from

Alzheimer’s Society (2013)

• Involvement of people with dementia

• Challenge stigma and build understanding

• Accessible community activities

• Acknowledge potential

• Ensure an early diagnosis

• Practical support to enable engagement in community life

• Community-based solutions

• Consistent and reliable travel options

• Easy-to-navigate environments

• Respectful and responsive businesses and services

‘Guidance for communities registering for the recognition process

for dementia-friendly communities’

Foundation criteria

• Make sure you have the right local structure in place to maintain a sustainable dementia friendly community

• Identify a person or people to take responsibility for driving forward the work

• Have a plan to raise awareness about dementia in key organisationsand businesses within the community

• Develop a strong voice for people with dementia living in your communities.

• Raise the profile of your work to increase reach and awareness to different groups in the community

• Focus your plans on a number of key areas that have been identified locally

• Have in place a plan or system to update the progress of your community after six months and one year

LGA/Innovations in dementia

(May 2012)

“People told us that a community could become more dementia-capable by:

• increasing its awareness of dementia

• supporting local groups for people with dementia and carers

• providing more information, and more accessible information about local services and facilities

• thinking about how local mainstream services and facilities can be made more accessible for people with dementia.”

LGA/Innovations in dementia

(May 2012)

“People told us they had stopped doing some things in their community because:

• their dementia had progressed and they were worried about their ability to cope

• they were concerned that people didn’t understand or know about dementia.”

“People told us that they would like to be able to:

• pursue hobbies and interests

• simply go out more

• make more use of local facilities

• help others in their community by volunteering.”

5. DFCs (Australia)

6. DFCs (Japan)

Japan’s “population pyramid”

“Ninchisho Supporters”

• By the end of the seminar, attendees are expected to have a good understanding of dementia, designed to combat stigma and discrimination.

• They become supporters and advocates.

• 6-hour training workshop.

• During the 90-minute Ninchisho Supporter seminar, attendees learn about dementia itself, how it affects the lives of those living with dementia and what they should know in order to effectively support people with dementia.

• Standard text and video materials are used nationwide for the seminars, with variations according to the attendee groups (for example, schoolchildren).

7. Key developments in English strategy/policy

“Prime Minister Dementia Challenge” –

loneliness and dfcs

“People with dementia talk about stigma and social isolation. They report losing friends following their diagnosis, seeing people cross the street to avoid them, feeling lonely, and struggling to use local services. Research with the general public has shown that this is often down to the fear, misunderstanding and helplessness people feel in the face of dementia. They simply do not understand enough to support someone to live well with dementia.”

9. Language

Alz Australia language guidelines – terms to avoid

(examples)

• “Sufferer”

• “Victim”

• “Demented person”

• “Vacant dement”

• “He/she’s fading away or disappearing”

• “Empty shell”

• “Not all there”

• “An attention seeker”

WHO “Age friendly cities”

• outdoor spaces and buildings

• transport

• housing

• social participation

• respect and social inclusion

• civic participation and employment information

• health and social care services

ADI “New domains and global examples”

DFC efforts are a response to pervasive and destructive stigma, a key finding in national and subnational Alzheimer plans.

DFCs give full voice to people living with dementia in their design and execution, understanding that at times we have a great challenge to listen to the voices of people living with dementia.

Prior to the earliest experiments in DFCs, for many years the World Health Organization (WHO) and key collaborators have been promoting and designating Age Friendly Cities (now expanded to communities)

In the UK, a serious effort to create clear standards for DFCs is underway.

• There should be a conducive social and physical environment

• Strong network of carers and supporters is essential

• People with dementia and their carers should be the key decision makers

• The whole community should be dementia aware most communities already have several good dementia friendly aspects, they only need further adaptations

• Better information packages and custom built training should be available

• “Dementia friends”, the responsibilities should be culturally appropriate and locally relevant

• Social welfare aspects of elderly with dementia is the most diverse aspect with many countries having no or minimal provisions.

Jacob Roy’s list

11. “Dementia Friends”: an example of a ‘social

movement’

Aslam (2006) Journal of Marketing

Communications

Making York (a city) more ‘dementia friendly’

Crampton, Dean and Eley (JRF 2012):

• better awareness and understanding of dementia

• a more consistent and supportive response from GPs and health nd social care professionals

• improved customer service, especially in larger and more ‘corporate’ companies where technology and speed are prioritised

• a slower pace of life generally, using quiet and green spaces better

• welcoming people with dementia to use all the facilities that the city has on offer

BART DELTOUR, FOTON

DEMENTIA CHARITY, BRUGES

“Having dementia is very tough

but having a city who excludes

dementia — that is really tough.”

Dementia friendly wards

• Persons with dementia do not attend hospitals

‘because of’ their dementia

• University Hospital Southampton NHS

Foundation Trust and Jeni Bell

• 28-bed ‘dementia-friendly’ ward

• brightly coloured doors

• images such as umbrellas, lighthouses and

starfish instead of bed numbers

Convention on the Rights of

Persons with Disabilities (“CRPD”)

Article 1 - Purpose

Article 2 - Definitions

Article 3 - General principles

Article 4 - General obligations

Article 5 - Equality and non-discrimination

Article 6 - Women with disabilities

Article 7 - Children with disabilities

Article 8 - Awareness-raising

Article 9 - Accessibility

Article 10 - Right to life

Article 11 - Situations of risk and humanitarian emergencies

Article 12 - Equal recognition before the law

Article 13 - Access to justice

Article 14 - Liberty and security of the person

Article 15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment

Article 16 - Freedom from exploitation, violence and abuse

Article 17 - Protecting the integrity of the person

Article 18 - Liberty of movement and nationality

Convention on the Rights of

Persons with Disabilities (“CRPD”)

Article 19 - Living independently and being included in the community

Article 20 - Personal mobility

Article 21 - Freedom of expression and opinion, and access to information

Article 22 - Respect for privacy

Article 23 - Respect for home and the family

Article 24 - Education

Article 25 - Health

Article 26 - Habilitation and rehabilitation

Article 27 - Work and employment

Article 28 - Adequate standard of living and social protection

Article 29 - Participation in political and public life

Article 30 - Participation in cultural life, recreation, leisure and sport

Article 31 - Statistics and data collection

Article 32 - International cooperation

Article 33 - National implementation and monitoring

Article 34-50 various issues including procedural aspects

Problems with banking

• When using a bank, 66% of people with dementia need some assistance.

• Difficulties were experienced by 76% of people with dementia when using a bank.

• When paying bills, 70% of people with dementia

• need assistance.

• Of the carers the Alzheimer’s Society asked, 80% said that banks need

• a greater understanding of lasting powers of attorney.

• 84% of carers help people with dementia deal with the bank.

• Without a recognised power of attorney, carers reported that

• banks and utility companies refused to deal with them.

“An inclusive society is one that leaves no

one behind.” (Design Council)

• Welcoming to everyone

• Responsive to people’s needs

• Intuitive to use

• Flexible

• Offer choice when a single design solution cannot meet all user needs

• Convenient so they can be used without undue effort or special separation and so that they maximise independenc

“Legible environments” (Housing LIN)

• A clear hierarchy of spaces including private, semi-private, semi-public and public spaces

• Plenty of views of the outside provide interesting views, natural light and ventilation.

• Being able to see outside helps orientation and wayfinding and a sense of connection to the wider world

• A minimum of wide, short corridors, single banked to allow natural light and views of the outside.

• There is conflicting evidence about the effectiveness of signs and colour coding.

The “Don’t forget to go outside” campaign

from Leuven

Inclusive Design for Getting Outdoors (I’DGO)

• I’DGO (Inclusive Design for Getting Outdoors) was a research project funded by the Engineering and Physical Sciences Research Council.

• It explored if, and in what way, the ability to get out and about impacts on older people’s quality of life and what barriers there are to achieving this day-to-day.

• I’DGO research involved over 4,350 participants and was undertaken in two key phases over a ten year period (2003-2103).

• The team involved research centres in the Universities of Edinburgh, Salford, Warwick and Heriot-Watt.

Key messages

• The desire to get out and about does not

diminish in older age, nor does the variety of

activities people like to do outdoors.

• If older people live in an environment that

makes it easy and enjoyable for them to go

outdoors, they are more likely to be physically

active and satisfied with life.

Key messages

• People who don’t find it easy or enjoyable to

get outdoors can spiral into poor physical

health, less social contact with others and a

reduced quality of life overall.

• Lesser-quality environments are often

considered by older people to pose an

increased falls risk, especially by those with

vision, mobility or other impairments.

17. Leisure

18. Education

“Education, the brain and dementia:

neuroprotection or compensation?”

“More education did not protect individuals from

developing neurodegenerative and vascular

neuropathology by the time they died but it did

appear to mitigate the impact of pathology on the

clinical expression of dementia before death.”

(EClipSE Collaborative Members, Brain. 2010

Aug;133(Pt 8):2210-6.)

19. Research

20. Conclusion

1. Definition

2. Considerations

3. Alzheimer’s Society (current framework)


5. DFCs (Australia)

6. DFCs (Japan)

7. Key developments in English dementia/strategy


9. Language


11. Dementia Friends: an example of a social movement






17. Leisure

18. Education

19. Research

20. Conclusion

• All Party Parliamentary Group on Dementia

• Alzheimer’s Disease International

• Beth Britton

• Prof Alistair Burns

• Mick Carmody

• Amy Dalyrymple (Alzheimer Scotland)

• Karen Harrison Dening

• Anna Gaughan

• Jayne Goodrick

• Darren Gormley

• Ruth Hannan

• Hilda Hayo

• Prof John Hodges

• Agnes Houston

• Geoff Huggins (Scottish Government)

• Jeremy Hughes

• Simon Kitchen

• Prof Facundo Manes

• Sally Ann Marciano

• Colin McDonnell

• George McNamara

• Jenni Middleton

• Steve Milton

• Chris Roberts

• Helga Rohra

• Prof Martin Rossor

• Kate Swaffer

• Rachel Thompson

• Andy Tysoe

• Marc Wortmann

And Radcliffe Health, and Jessica Kingsley Publishers.

Dementia friendly communities - my talk this evening

Education

Transcript of Dementia friendly communities - my talk this evening