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24 June 2008
Something can be done Dual sensory impairment in the elderly
24 June 2008Information Center for Acquired Deafblindness © 2
Prevalence studies
24 June 2008Information Center for Acquired Deafblindness © 3
Prevalence – ”care system”
22
18
12,2
4
10
0
5
10
15
20
25
Denmark (avg.93)
Sweden (avg.86)
Australia(avg.82)
Norway (avg.87)
Norway(nursinghomes)
24 June 2008Information Center for Acquired Deafblindness © 4
Why aren’t they found?
Slow progression
Lack of awareness
”I am just old”
Overshadowed by other ailments
”On home turf”
Misunderstanding of symptoms
And anyway: Nothing can be done!
24 June 2008Information Center for Acquired Deafblindness © 5
Doing something matters
Close link between uncorrected sensory impairments and poor quality of life
Elderly with DSI who receive the right rehabilitation─ Better mood─ Fuller social life─ Easier daily living
Their quality of life leans towards that of others
To act costs less than doing nothing
Appollonio et al. Age Ageing 1996; 25
24 June 2008Information Center for Acquired Deafblindness © 6
Action steps
Awareness
Identification
Service provision─ Who?─ What?─ How?─ (Speed!)
Lobbying
24 June 2008Information Center for Acquired Deafblindness © 7
Support providers
If ”deafblind system”─ How to deal with the vast numbers?─ How to get called upon?─ Overkill?─ The word ”deafblind”
If ”mainstream system”─ How to give staff in the elderly sector knowledge about deafblind
specific tools and techniques?─ How to motivate them?─ How to coordinate service?
24 June 2008Information Center for Acquired Deafblindness © 8
Service providers
Mostly mainstream service providers:
Sweden
Norway
Italy
India
Spain
Belgium
Venezuela
Uganda
Canada
Denmark
UK
Netherlands
Germany
USA
Also deafblind service providers:
24 June 2008Information Center for Acquired Deafblindness © 9
Denmark
Approx. 5% of all elderly over the age of 80 have a significant combined hearing and vision impairment
A total of around 10.000 people
Deafblind consultants are in contact with approx. 500
Approx. 4% of the Danish population is over the age of 80
In 2040 this portion will increase to over 9%
24 June 2008Information Center for Acquired Deafblindness © 10
The problem in brief
More than 10 times as many as previously estimated
Don’t get the help and support they need and have the right to
Withdrawal, isolation, reduced quality of life, somatic and mental problems
Very good service system
24 June 2008Information Center for Acquired Deafblindness © 11
Danish service system
Family doctor
Preventive home visits
Home helpers
Nursing home staff
Home nurses
Family & friends
Deafblind organisatio
n
Vision rehabilitation
Hearingrehabilitation
Deafblind consultant
s
Hospitals etc.
Contact persons (Interpreters)
24 June 2008Information Center for Acquired Deafblindness © 12
What do they need
Three things (first and foremost):
Identification
Identification
Identification
The sooner, the better
24 June 2008Information Center for Acquired Deafblindness © 13
Then what?
”Contact person”
Advice and counselling
Coordinated approach from vision and hearing rehabilitation system
Correct vision and hearing aids
”Proper” behaviour in family and staff around them
Peer support
Front of line for technical aids, cataract operations and other rehabilitation measures
(Increased medical attention)
24 June 2008Information Center for Acquired Deafblindness © 14
Contact person
Danish legislation since 1991
4-10 hours per week
Help with─ Communicate─ Mail, news─ Link to environment (shopping, bank, post office)─ Guide, accompany─ ”Eyes and ears”
Employed by municipality
No formal training, supervised by deafblind consultants
24 June 2008Information Center for Acquired Deafblindness © 15
Our activities
2006: Information campaign – Primary aim: awareness
2007 + 2008: Information targeted at professionals – Primary aim: identification (+ coordination)
24 June 2008Information Center for Acquired Deafblindness © 16
Media campaign
Press kit─ Press release─ Fact sheets─ Simulation glasses and ear plugs─ Solo story─ Cases!
Direct contact
Well received
Meetings with members of parliament
24 June 2008Information Center for Acquired Deafblindness © 17
24 June 2008Information Center for Acquired Deafblindness © 18
It doesn’t get any better…
Is everyone included?
Until now Danish hearing and vision specialists have assumed that there were 900 elderly deafblind in Denmark. But according to new calculations the number is closer to 15,000, Berlingeren (Danish newspaper) writes.
- - -
Just to make sure: Did you also count all those in the Parliament?
24 June 2008Information Center for Acquired Deafblindness © 19
Question guide
Experiences from earlier projects in Denmark and Norway─ Questions for the person about his/her functioning give valid
answers
Not a questionnaire
Should be possible to use without instructions
24 June 2008Information Center for Acquired Deafblindness © 20
Pilot project Hvalsø
214 elderly over the age of 80
5 % of 214 = 11
45 home visits during the project
Question guide was used eight times
Four deafblind elderly identified (= 8.9% of total visits)
24 June 2008Information Center for Acquired Deafblindness © 21
Pilot project Langeland
1700 elderly over the age of 75
5 % of 1700 = 85
Question guide used 186 times
10 elderly (5.4 %) with some degree of dual sensory impairment were identified
83 elderly (44.6 %) with some degree of hearing impairment
34 elderly (18.3 %) with some degree of vision impairment
24 June 2008Information Center for Acquired Deafblindness © 22
Leg 1: Preventive home visits
Question guide for use in preventive home visits
Mail to the members of the organisation with an article and the question guide
Two half day seminars
Article and question guide in the online tool box of the The Danish Knowledge Center on Ageing
Presentation at the professional annual meeting
Article in their journal
24 June 2008Information Center for Acquired Deafblindness © 23
Leg 2: Nursing homes
Poster and information folder for the 1500 nursing homes
Like hearing through a blanket and seeing through fog…
24 June 2008Information Center for Acquired Deafblindness © 24
24 June 2008Information Center for Acquired Deafblindness © 25
Leg 3: General Practitioners
Article for Monthly Journal of Practical Medicine (together with a GP)
”What can the GP do?”
24 June 2008Information Center for Acquired Deafblindness © 26
Leg 4: Vision and hearing rehabilitation
Use of question guide
Coordination of service
24 June 2008Information Center for Acquired Deafblindness © 27
Leg 5: Students
Letter for schools for nurses, occupational and physio therapists, social and health assistants
• Information about this topic
• Offer for more information from our center or a visit from the association of the deafblind
24 June 2008Information Center for Acquired Deafblindness © 28
Leg 6: Home help system
Introduction for the home help in a district in Copenhagen
Agreement on continuing contact while they use the question guide
24 June 2008Information Center for Acquired Deafblindness © 29
Leg 7: Family
Awareness of symptoms
Information campaign
24 June 2008Information Center for Acquired Deafblindness © 30
Information material
For home helpers
For nursing home staff
For hospital staff
Collaboration with vision and hearing (and age care)
24 June 2008Information Center for Acquired Deafblindness © 31
Next steps
Continue identification work
Better service
Staff training
Obstacles:─ Little time and motivation─ Competition for awareness and interest from professionals
24 June 2008Information Center for Acquired Deafblindness © 32
Swedish project
Demographic survey
10 hour module on DSI in the elderly─ Own experience─ Hearing and vision impairment and its functional consequences─ Interaction, ethics, communication─ Rehabilitation (discussion and thoughts)
Spreading to other municipalities
Train the trainer
24 June 2008Information Center for Acquired Deafblindness © 33
Outcome of training
Increased knowledge that can be transformed into competence, motivation and increased understanding
Increased will to learn more and to act as a catalysist in age care
24 June 2008Information Center for Acquired Deafblindness © 34
What is important
To use the phoneTo be able to use hearing aidsTo have good home lighting and other adaptations for visionThat relatives and staff understand DSITo have access to news and other important informationTo be able to use an interpreterTo know who is at the doorTo know if and who enters or leaves the roomTo move around in the close environment – and know how it looks
24 June 2008Information Center for Acquired Deafblindness © 35
Main importance
That someone takes responsibility that you are seen on the basis of your possibilities and rights!
24 June 2008Information Center for Acquired Deafblindness © 36
Norwegian project
Online learning tool
Hearing and vision
Target group: Municipal staff
www.sansetap.no
24 June 2008Information Center for Acquired Deafblindness © 37
The aim is not to put years to life
…but to put life to years
24 June 2008Information Center for Acquired Deafblindness © 38
24 June 2008Information Center for Acquired Deafblindness © 39
Variation is not the spice of life;
it is the true essence of it
Woodburn Heron, 1957
24 June 2008Information Center for Acquired Deafblindness © 40
The problem is being aware
that this is a separate disability.
And that something can be done.
Else Marie Jensen