Supporting People with Intellectual
Disability and Dementia:
A Training and Resource Guide
Power Point Presentation for Direct Support Staff & Frontline
Managers – Day Two
Supporting people
with Intellectual
Disability and
Dementia:
A Training and
Resource Guide
Rachel Carling-Jenkins and Professor Christine Bigby
Welcome
Recap from Day One
and review of
worksheets
Session 1 objectives
Understand the prevalence of
dementia within different
populations of people with
intellectual disability
Understand what dementia means
Understand how it is diagnosed
Share your knowledge and stories
Three elements common to all forms of dementia:
1. Progressive
2. Terminal
3. Incurable
Session 2 objectives
 Understand what it is like to live with
dementia by introducing the two
laws of dementia
 Understand what it is like to live with
dementia through “Supporting
Derek”
How can we effectively support and
care for someone who has both an
intellectual disability and dementia?
Two Laws of Dementia
Law 1
The Law of Disturbed
Encoding:
A person with dementia can
no longer successfully
transfer information from
their short term memory into
their long term memory
Law 2
The Law of Roll-back
Memory:
As dementia progresses,
long term memories will
begin to deteriorate (roll
back) and eventually
disappear altogether
A person with dementia lives in a different reality.
Our job is to support and work with this
alternate reality.
Session 3 objectives
•
•
•
•
Identify areas of practice which will need to
change as you continue to work with someone
with dementia
Identify areas of practice which remain the same
as you continue to work with someone with
intellectual disability
Understanding the changing needs of someone
as they progress through the stages of dementia
Understand behaviours within the context of
dementia care
Progression of dementia
• Occurs at different
rates
• Abilities can change
day to day or even
within the same day
• Not all factors present
in all people
• People can remain the
same for long periods
• Not all people will
appear to go through all
stages
Three
Stages:
EARLY =
MIDDLE =
(Moderate)
LATE =
(Advanced)
Changing balance of support and care
Support
Care
Support
Care
Support
Care
Support
Palliative
Care
Early to middle to late to terminal stages of
dementia
Session 4 objectives
 Understand the intersection of
disability and aged care systems
 Role of mainstream health services in
providing care to people with
intellectual disability & dementia
 Role of mainstream allied health
professionals in providing care to
people with intellectual disability &
dementia
A collaborative effort is required
– rarely will you find one expert who
covers all areas
Disability Services:
expertise in
intellectual
disability
Health Services:
expertise in
diagnosis and
allied health
support
Aged Care:
expertise in
dementia care
and service
provision
A little about my background…
• Name? Position?
• One thing that you want answered
during this training?
Agenda– Day Two
9.30 – 10.00
10.00 – 12.00
12.00 – 12.30
12.30 – 1.30
1.30 – 2.30
2.30 – 3.30
3.30 – 4.30
Reflections from Day One
Session 5: General Strategies
Session 6: Dementia-friendly environments
Lunch
Session 7: Responding to pain
Session 8: Organisational responses
Review & Evaluations
By the end of the day…
End of introduction
Session 5
General Strategies
Session 5 objectives
Understand how to communicate with
someone with disturbed encoding
Understand the role of strategies in
solving the puzzle of the past and the
puzzle of the present
Know how to bring meaning into
everyday activity for people
throughout different stages of
dementia.
COMMUNICATING WITH SOMEONE WITH
DISTURBED ENCODING
-SLOW
-SIMPLE
-SPECIFIC
-SHOW
-SMILE
Slow
Slow down your rate of speech
Wait for the person to respond
Take time to listen
Be patient – completing conversations
and tasks will take longer now
Simple
 Present one idea or task at a time
 Use short, simple sentences or
phrases
 Communicate in stages –
e.g. First explain one step, then the
next
 Reduce background noise – focus
on one person at a time
Specific
 Use names (Steve, Sue) not
pronouns (he, she)
 Involve elements of reminiscence to
every phase of your work by referring
to specific people, things and/or
events
Show
 Point to objects
 Demonstrate how to do a task
 Cue someone in: e.g. ask someone to
sweep the floor while holding a broom
 Use visual aids - photographs or choices:
e.g. “would you like a cup of tea (holding
the cup) or a juice (holding the juice
container)?”
Smiles
 Smiles communicate where words
cannot
 Facial expressions can be used to
express empathy and encouragement
to someone who is becoming
increasingly nonverbal
 Smiles are often returned, setting the
mood for the day 
Don’t Ignore
 Don’t ignore expressions of feelings – remember
they may be nonverbal expressions
 Don’t ignore identity as brother/sister,
son/daughter, housemate, service consumer
 Don’t ignore their presence: don’t talk around a
person like they are not there
People with Dementia are entitled to be
treated with dignity and respect
We are all allowed to
have bad days in our
own home.
MESSAGE
Communication Strategies in Dementia for Care Staff
Developed by: Helen Chenery, Erin Conway, Rosemary Baker and Anthony
Angwin
M – Maximise Attention
E – Expression & Body Language
S – Keep it Simple
S – Support their Conversation
A – Assist with Visual Aids
G – Get their Message
E – Encourage & Engage in Communication
Puzzles of the past strategies
The puzzle of the past
Explore history to understand the present
- Reminiscence support
- Need to know a person’s background
Knowledge of history can lead to:
- Comfort in times of confusion or boredom
- Understanding of “behaviours of concern”
The puzzle of the past
Explore history to understand the present
• Reminiscence Support Strategies:
- Life story work
- Rummage box
- Activity aprons
Strategy: Life Story
– Introduction (Name, including nick names)
– Family history (including place in family, contact with family)
– Childhood (including institutions lived in, schools attended)
– Timeline of life
– Significant events (such as holidays)
– Significant places (which bring meaning to the person)
– Significant people (including friends, influences)
– Likes and dislikes
– Favourite hobbies
<Trainer to insert or show example here>
Strategy: Rummage Box
• Include reminders of happy events, hobbies,
favourite clothes
• Use reminders spanning different life stages
Strategy: Activity Apron
Provide sensory stimulation
Can be used as an individual activity
Provides links to the past and the
present
Also – activity pillows
Sometimes called “Sensory Aprons”
OTs can help with this.
Group work
Consider the following case studies: what
kinds of reminiscence supports would you
design for Ray or Jean?
Now, think about the people you work
with– do you know enough about their
history to be able to design reminiscence
supports for them? If not, where will you
get this information?
Case Study: Ray
Ray used to live in an institution where it was his job to fold
the laundry.
Ray is a mad football supporter. He is never happier than
when his team is playing.
Ray loves Elvis. He’s even visited Graceland and he has
photos to prove it!
Ray delivers pamphlets in the neighbourhood. He has to
fold them first, then walks around dropping them into
letterboxes.
Ray has been diagnosed with Alzheimer’s disease.
Discuss what Reminiscence supports
you could design for Ray
Case Study: Jean
Jean has grown up with her family. Her sister’s children – all
girls - have regularly come to stay with her and her Mum. Jean
loved to feed them and help change them when they were
babies.
Jean worked in a workshop folding boxes for many years. One
of the first symptoms of developing dementia occurred at work
when her work became messy and disorganised.
Jean loves to shop for clothes. She loves to accessorise with
matching tops, jewellery and handbags.
For birthdays, Jean would make people personalised cards. She
could not write very well, but she would sign her name on the
back of the cards.
Discuss what Reminiscence supports
you could design for Jean
Researching history – a few ideas
Ask family members who are still alive;
Pick up cues from the person about
their preferences (or ask them directly if
in earlier stages)
Check with members of staff, and
organisational records
Google: for information on institutions
(e.g.. Kew Cottages History Project,
online).
The puzzle of the
present –
strategies
The Puzzle of the Present
A different reality:
Does it really matter?
• Prompt without frustration
• Plan tasks and activities
• Play along with reality and have fun 
Prompt
Prompt without frustration
- Visual prompts
- Verbal prompts
Does it really matter if you have
answered the same question 10
times today?
Prompts - Visual
Visual Prompts
• Prompts can be used to help people with
dementia find their way around. They can
also help people to understand where they
are – e.g. I know I’m in the kitchen, because
there is food on the bench.
For example:
• Create signs for toilet doors
• Create a sign for bedroom doors
• Use pictures of food on fridges and in the kitchen
Prompts - Visual
Examples of Signs
Prompts - Visual
Prompts - Visual
Prompts – Verbal
Verbal prompts
• Gentle verbal prompting will help people
with dementia orientate to their
surroundings or refocus on tasks.
Remember:
- don’t get frustrated, you may need to prompt
someone or answer the same question
numerous times before seeing a result.
Plan
Plan tasks and activities:
- Have a plan
- Prepare all activities in advance
- Avoid surprises
- Explain your plan
- Be flexible
- Work as a team
- Consistency
Plan
Good planning will enable people to maintain
skills, maximise their independence, and avoid
confusion.
• Enable people to continue to make choices,
but make them simpler.
• Active Support– identify tasks which are
difficult to perform and break them down.
Can the person with dementia do some parts
of the task?
Play
The role of staff
•
Celebrate what the person can do
•
Don’t ask questions
•
Don’t argue or contradict a person
who is living in a different reality
Ask yourself, does it really matter if the
person with dementia believes their sister
is coming to visit this afternoon?
Group work
Consider the second part of the case studies – of
Ray and Jean.
- How are you helping them make sense of the
present?
- What new strategies can you implement where
you:
Prompt without frustration
Plan tasks and activities
Play along with reality and have fun
Case study – Ray, Part 2
Ray has been spending more time in his room lately. He doesn’t
seem to be really doing anything while in there. Sometimes he
will turn on the TV.
Ray has not been participating in the pamphlet deliveries,
leaving Barry to do most of the work himself. Barry has not
complained, but other staff have started to tell Ray that he needs
to “pull his own weight”. Ray looks upset and disappears into his
room when you hear a staff member say this to him.
Ray goes to a disco every two months. He has always enjoyed
the dancing. The next one is Friday night and other staff are
thinking of skipping it because Ray hasn’t realised it is on. Ray
finds it difficult to get in and out of the bus now, so staying home
seems reasonable.
Last time Ray visited the psychiatrist he was diagnosed as being
in middle stage Alzheimer’s disease.
Case study – Jean, Part 2
Jean has been pulling out her clothes and laying them out on
her bed during the day. It has become quite a task for staff
to tidy up after her when it comes time for bed.
Jean is enjoying the craft box you made for her. She gets it
out at all times during the day and fiddles with the contents.
Last night she got it out just before dinner. Jean had glue
and glitter and cardboard all over the dining room table.
Staff were unhappy and scolded Jean for making such a
mess. They put her box away in the staff room where you
find it when you come on shift the next morning.
You read the diary and find that Sarah (a fellow resident)
needs to go to the chemist today. You are on your own with
Jean and Sarah, so both ladies will need to go. When you
go look for Jean you find her laying clothes out on her bed.
Adding meaningful
activities into the
day
Are these examples of meaningful activities
for someone with dementia?
Why or Why Not?
Think about the people with
dementia you support.
Are they engaged in meaningful
activities throughout the day?
Meaningful activity throughout the stages - Ray
Early Stage – Ray folds
the laundry most times
Middle Stage – Ray rolls
towels up in a ball and says
they are folded
Late Stage – Ray reaches
out to touch the laundry
basket when he is
“wheeled” past but does not
attempt to get clothes out of
it
Early Stage – Support Ray to fold the
laundry, using active support – visual
& verbal prompts
Middle Stage – Continue to support
Ray to fold the laundry, praising his
efforts.
Late Stage – Care for Ray by
spending time with him. When Ray
reaches out to the basket, stop.
Spend time folding the clothes. Put
clothes in Ray’s hands for him to hold
while you work.
Group work
Now look at the case studies
one last time.
How will you add meaningful activity
throughout the stages for Ray (e.g.
paper delivery or Elvis/dancing) and for
Jean (e.g. Craft or shopping/clothes)?
When it comes to personal care…
Individualised manual handling plan –
updated regularly & proactively
Procedures for providing personal
care – consistently applied
Regular staff meetings – to discuss
strategies, changes and plans
Tips for engaging with someone with dementia in
personal care activities
• Introduce yourself by name;
• Get down on the person’s
eye level;
• Hold their hand;
• Face the person when
possible;
• Do not rush;
• Praise all efforts to help;
• Use gentle touch to guide;
• Help initiate activity;
• Warm bathrooms and toilets
(esp. in winter);
• Use warm towels;
• Maintain dignity;
• Introduce water from toes
up;
• Know former preferences,
e.g for bath/shower, for
taste.
Summary
Support
provided to
understand
the present
Support
provided to
live within
their reality
Good quality
of life for
someone
with
dementia
?
?
End of Session 5 – Quick break anyone?
Session 6
Creating Dementia
Friendly
Environments
Session objectives
Understand what a dementia
friendly environment looks like
Understand your role in creating a
dementia friendly environment
What does a dementia friendly environment
look like?
A dementia friendly environment
There are many things we can do within the
home to assist people with dementia to
make sense of their environment.
Five Key Elements:
1. Calm
2. Predictable
3. Easy to interpret
4. Homely
5. Safe
1. Calm
Calm
versus
Noisy and/or cluttered
Calm: The role of staff
-
Remain calm
Keep voices low and even toned
De-clutter benches
Do not show stress or frustration
Don’t rush through activities
Walk rather than run
2. Predictable
Time for bed
Know what to expect versus mixed messages
Predictable: The role of staff
- Pay attention to your body language,
and the way you dress
- Put the food on the table before calling
someone to the dinner table
3. Easy to interpret
Understandable
versus
Confusing
Visuoperceptual difficulties can lead to
• Spatial disorientation even in familiar environments;
• Difficulty judging the height of floors when patterns or
colours change;
• Not wanting to walk on shiny tiles (they look wet and
slippery);
• Inability to locate items which are in front of them;
• Distracted easily by patterns (in paintings or wallpaper);
• Difficulty sitting in a chair, bed or toilet;
• Restlessness in visually over-stimulating environments.
(Reference: Alzheimer’s UK)
Think about…
- How to find the toilet without verbal prompt
- How to find your bedroom by yourself
- What clues are needed to show people
what a room’s purpose is: such as the
kitchen
- Removing mirrors
- The use of primary colours
How do I wipe my hands?
4. Homely
Homelike
versus
Workplace / clinical
5. Safe
Safe
versus
Unsafe
A few pointers…
Outside the home:
- No corners in paths
- Ramps
- Consistent colour patterns
Inside the home:
- Handles on cupboards
- Consistent flooring
- Primary colours to contrast doors
- Avoid shadows and dim hallways
- Remove locks on bathroom doors
- Empty dishwashers promptly
Safety devices
Essential devices:
 Smoke alarms
 Safety switches
 First aid kit
 Fences around water (including pools and ponds)
 Security grills on upstairs windows
Examples of additional devices to consider
 Hand rails
 Safety strips on stairs
 Automatic cut off devices
 Nightlights
 Sensor mats or door alarms
 High visibility (temporary)signage
 Power point protectors
Case studies
Group Work
Consider the following case studies
– what modifications would you
introduce to the environment to
“solve” the issues presenting?
Case study: Pat
Pat is a lady with Down syndrome and
dementia. She is very overweight and needs to
be encouraged to walk. One thing she likes to
do is walk around the back yard. There is a
ramp into the back yard and recently, Pat has
needed coaxing to walk from the brown tiles in
the kitchen out onto the red ramp.
• Quick fix: one tin of paint!
• Result: able to access the back yard again.
Case study: Miles
Miles is trying to make a cup of tea, but he’s getting
frustrated when he can’t open the new cupboard
doors. Staff have started making his cup of tea for
him. Miles has stopped going into the kitchen.
• Quick fix: put old handles back on doors
• Result: Miles still able to open cupboard, still may
need supervision – but maintaining some
independence
Case study: Ben
Ben needs a new bed. Now that he has mobility problems
associated with later stage dementia, Ben needs a hospitaltype bed which can be lowered as needed. The bed is
smaller than his old bed and his favourite bed spread
(Geelong Cats!) doesn’t fit. It gets caught in the mechanism,
so it has been replaced with a plain navy blue cover. Ben
stiffens up every time he sees the bed. Staff know that Ben
had some bad experiences in hospital when he was younger.
• Quick fix: Sew up the Cats bedspread to make it smaller;
hospital backboard covered in left over material.
• Result: Ben happy to go to bed at night
Case study: Sue
Sue is upset when agency staff or new casuals are
on shift. They tend to be task orientated and
concentrate on ticking off their job lists. Sue is in
early stage dementia so she doesn’t need a lot of
help with self care, but she has been craving more
attention from staff over the last few weeks.
• Quick fix: Clear guidelines left for new staff
• Result: Sue gets the attention she deserves and
new staff learn best practice principles
Case study: Steve
Steve has been wondering the hallways at night, raiding
the fridge, then walking around knocking on bedroom
doors. Staff have started locking the fridge at night and
telling Steve to go back to bed.
• Quick fix: staff gentle redirection, signs on his door,
nightlight outside his door showing way back to his
room, snack accessible on bright red plate on top
shelf of fridge
• Result: Steve gets up, eats his snack, goes back to
bed often without prompting
Summary
Support
provided to
understand
the present
Support
provided to
live within
their reality
Dementia
friendly
environment
created
Good quality
of life for
someone
with
dementia
?
End of Session 6 – Time for a lunch break
Session 7
Responding to Pain
Session objectives
Understand the association between
pain and dementia
Recognise the signs of distress which
may be indicating pain
Know what to do when pain is present
Pain in people with dementia
 Can no longer be reliant on verbal self
report
 Pain is a common experience for people
with dementia due to the associated
physical conditions
 Often misinterpreted as ‘challenging
behaviour’
 Often left untreated
Myths about pain
#1: People with
intellectual disability
have a higher pain
threshold when
compared to the
general population.
Result: Pain in people
with intellectual
disability is ignored, left
undiagnosed and
untreated
#2: Pain is an inevitable
part of ageing
Result: Pain in older
people is ignored,
leaving underlying
treatable conditions
undiagnosed and
untreated
Pain management is a Human Right
The adequate provision of pain relief and pain
management is a human right protected by
the Convention on the Rights of Persons with
Disabilities in:
Article 17 - Protecting the integrity of the
person
Article 25 - Health
Pain in mid-late stages of Alzheimer’s disease
In mid-late stages,
plaques accumulate in the
parietal lobe.
Parietal lobe: responsible
for structuring language &
recognising sensory
functions
Result for person with AD
- find it difficult to
communicate pain
- can no longer identify
the type, location,
duration &/or severity of
pain experienced
Pain in mid-late stages of Alzheimer’s disease
Changes in “odd” or “challenging”
behaviours are often attributed to
the diagnosis of dementia.
Symptoms of pain are being missed.
If pain is left undiagnosed and/or untreated a
person will experience:
 Increased intensity of pain;
 Increased duration of pain;
As a result:
 Experience prolonged periods of associated
distress;
 Escalation of ‘challenging’ behaviours;
 Decreased quality of life overall.
Using behaviour to communicate pain
People with dementia may communicate pain through the
following behavioural signs:





Decreased mobility;
Change in mood;
Sleep disturbance;
Change in appetite;
Prolonged periods of screaming or vocalisations.
Group work
Divide into two groups to discuss the
following two case studies:
Case Study 1: Sally
Case Study 2: Ian
Case study: Sally
Sally was assessed as being in mid-stage Alzheimer’s disease. One day, she
suddenly began to scream. Her throaty, loud vocalisations would continue for
hours at a time. Staff complained that Sally could scream for their whole shift.
Then sometimes, Sally would stop for no apparent reason. Everyone in the
house was exhausted. Mary (one of Sally’s fellow residents) began to hit Sally
and shout at her to be quiet. Staff were constantly having to keep Sally and
Mary apart. Sometimes this meant taking Sally into the office with them, where
she would scream while they were trying to make phone calls.
One day, Sally suddenly stopped screaming. She sat in her chair, no longer
feeding herself or interacting with anyone. Soon after she was assessed as
having moved into the late stage of Alzheimer’s disease.
Questions for Group Work:
1. What investigations could staff have carried out to identify the source of
Sally’s screaming?
2. What quality of life did Sally have while she was screaming?
3. Why did Sally suddenly stop screaming? (Prompt: Was she no longer in
pain?)
Case study: Ian
Ian was generally a happy man. He had never learnt to read or write, but loved to look
at picture books. He’d help out around the house when he could. Now that he had
developed Alzheimer’s disease he did not always set the table right anymore (putting
out three spoons instead of a knife, fork and spoon at each place setting), and
sometimes he took the clothes off the line before they were dry. Staff were kind and
covered his mistakes – praising him for setting the table for example, and discreetly
putting the clothes in the dryer when required.
One day Ian did not get out of bed. He complained of a pain in his left leg. Staff were
very concerned. An ambulance was called and Ian spent a day at the hospital having
scans on his leg. There was no reason for him to feel pain in his leg however and he
was sent home. Ian refused to walk on his leg, crying out whenever he was coaxed to
stand. Staff eventually bought Ian a wheelchair. He never walked again.
Questions for Group Work:
1.
What additional investigations could staff have carried out to identify the source
of Ian’s complaint about his leg?
2.
Ian broke his left leg when he was 10. How is this information useful in
understanding what may be going on for Ian?
3.
What quality of life did Ian have now that he was in a wheelchair?
4.
When Ian used the wheelchair, did he still experience pain?
Tools for identifying pain
Abbey Pain Scale
• Quantifies pain
• Originally designed for
aged care residents with
late stage dementia
• No specific training
required to administer
• Quick to complete
Reference: Abbey et al
2004
Tools for identifying pain
DisDat
“Distress may be hidden but
it is never silent”
• Qualitative tool
• Best completed by
someone who is familiar
with the person with
dementia
• No specific training
required to administer
Reference: Regnard et al
2007
Algorithm for the assessment of pain in adults with
intellectual disability & dementia
When pain is identified or suspected
Medical
Assessment
Team
Work
Allied
Health
Assessment
Action: Medical Assessment
• Medical assessment is key to identifying
underlying causes;
• The use of PRN medication needs to be clearly
defined by a person’s GP or specialist. Eg.
What signs of distress indicate the need for
PRN?
• Further tests may be required to rule out
treatable conditions.
Action: Allied Health
• Is equipment being used correctly? (e.g. Roho cushions,
adjustments to wheelchair positioning)
• Is equipment adequate? (e.g. Chairs at correct height to
support posture, mattresses which minimise pressure sores,
etc). Check with physio or OT.
• Get help with communication strategies.
• Obtain a swallowing assessment (e.g. if distress occurs at
meal times). Ask a speech pathologist.
• Need help with non pharmacological strategies? Seek out a
dementia specialist or OT.
Action: Team Work
• Hold regular team meetings;
• Identify organisational response to
monitoring and assessing pain;
• Abide by medical instructions regarding
pharmacological responses to pain;
• Follow guidelines from allied health
professionals;
• Brainstorm strategies for non
pharmacological pain relief.
…pharmacological interventions for
persistent pain are most effective when
combined with non-pharmacological
approaches…
Gibson, 2006
Some useful non-pharmacological strategies
•
•
•
•
•
•
•
•
•
•
•
•
•
Activity aprons or rummage box;
Music;
Massage;
Non pharmacological
Aromatherapy;
Gentle exercise;
strategies can provide
Visiting the toilet;
relaxation – thus
Lying down;
alleviating pain –
Pressure care;
and/or distraction from
Keeping up fluids;
pain.
Puzzles;
Extra cushions;
Feet up;
Change of scenery (e.g. going outside).
Group work
• Reflect on your case study;
• Look at the tools & the Algorithm;
• Recall the strategies from Session 4; then answer the
following:
- Do you think Sally / Ian could have been assessed as
experiencing pain or distress according to the tools?
- Follow the algorithm through – what observations would
you have made?
- If Sally / Ian had been identified as being in pain, what
action could you have taken?
Summary
End of session 7
Session 8
Organisational
Responses
Session objectives
 Understand the organisational
responses post-diagnosis
 Understand the role of support workers
within the decision making process
 Know how, when, and with whom to
share a diagnosis of dementia
 Understand the complex nature of
making decisions around transitions
Many decisions need to be made post-diagnosis
Individual
decisions
Best
Interest of
Person
Practice
decisions
Organisational
decisions
Decision making – a collaborative approach
Family
Support
Staff &
Frontline
managers
Medical
practitioners
Aged
Care
staff
Person
with
dementia
as focus
Management
of
organisation
Community
health staff
House
mates
&
friends
An example of reality?
Management
decides on
transitions
Support
Workers
decide on
practice
Next of Kin
decides on
disclosure of
diagnosis
Unclear and separate decision
making structure
Need for decision making protocols prior to crisis
• Professional decision making by staff - which staff when ?
So Paul told me to more or less start to look for alternative accommodation because they
couldn’t manage in the house, you know?
She said he needs high-level care and she gave me the form and she said “I want you to
go now and look at nursing homes.”
• No sense of rights of family or person
He said: “Do you think we should ask a solicitor?” but I don’t want to fight anybody, I just
want to know what the rights are as far as the bureaucracy is concerned…I mean they
can’t just say: “Look, he has to go this afternoon”, can they?
• Absence process, family involvement or independent advocacy
Often hurried at time of acute health crisis - which subsequently passes
• Such things are critical in face of health improvements and sense of puzzlement
by aged care staff
– Why is he here?
– We can’t provide the same level of care
– Much higher staff resident ratios in group homes
•
Irreversible decisions once taken
(Bigby, Bowers, Webber, 2010)
Responsibilities of frontline staff
 Inform team leader/manager as soon as a diagnosis of
dementia is confirmed
 Adapt practice and day to day support
 Inform team leader/manager of changes to the balance
of support and care being provided
 Coordinate with other services involved in person’s life –
health day programs, leisure
 Liaise with family to extent they wish
 Inform team leader/manager of any feedback or
complaints from other organisations (such as Day
Programs) and/or next of kin
This will enable the management team to make informed
decisions.
Responsibilities of Operational Management
 Put clear decision making processes in place
which provide family & friends with
confidence and clarity, and which provide
frontline staff with clear direction
 Make informed decisions based on reports
from frontline staff, particularly regarding the
changing balance between support and care
strategies
 Consider accommodation options, including
the feasibility of environmental modifications,
in early stages. Transitions don’t need to
happen early, but planning for them should.
Decisions affecting
the individual:
Disclosing Diagnosis
Decisions affecting the individual
To tell or not to tell…
Once someone is diagnosed with dementia,
decisions need to be made about who to
share this information with – and how.
Consider the following groups:
Decisions affecting the individual
Telling someone they have dementia
Consider:
- Pros and cons for each individual
- Due to the effects of roll back memory, a person is likely to forget their
diagnosis
Case Study: Marley
Marley sits at the kitchen table. He’s gently hitting his head. He looks up,
slightly confused, and says “something’s wrong with me”. He did the same
thing yesterday. Yesterday he even asked if running away would help.
Marley was diagnosed with Alzheimer’s disease a month ago.
Should Marley be told that he has dementia?
Telling peers
Consider:
- Not knowing can foster resentment
- Knowing means peers can play a role in support if they choose
to
Case Study – Ethel
Ethel has been very difficult lately. She used to be so compliant and
helpful. Now she is constantly picking on Beth. You have had to
separate Beth and Ethel on more than one occasion. Beth has
always been a bit aggressive and you have caught her shoving
Ethel when she thinks you aren’t looking. Ethel was recently
diagnosed with dementia. Will disclosing this diagnosis to Beth help
restore harmony within the home?
Bottom line: A support worker cannot take on the responsibility of
telling peers that someone has dementia without direct instruction
from management and/or next of kin. Support workers can make
recommendations 
The role of friends
• Demonstrating the
importance of
supporting
relationships for
people with
intellectual
disability who
develop dementia
Tips for telling peers
 Plan a quiet time and place
 Plan who is going to share the information (e.g. You might want to
bring in a social worker, or the team leader.)
 Plan who might need to be there to provide support to peers (e.g.
Keyworker, parents)
 Explain in simple terms, using visual aids
 Explain what this means for them
 Allow time for processing the information
 Lead an open and frank discussion
 Allow peers to contribute ideas about how to support the person
with dementia to remain a valued member of the household
Telling family
-
Next of Kin must be formally notified as soon as a diagnosis has been
confirmed
- Next of Kin will need information and regular updates
- Next of Kin decisions:
• Who else to disclose this to within the family
• Involvement in future planning
Case Study – Jim
Jim is in late stage dementia. He can no longer walk or feed himself. Staff
have begun to make preparations for end stage care. A case manager has
come in to help with this – and asks what wishes the family have
expressed. The staff express their doubts that Jim’s dad even knows
about the diagnosis. “He’s so hard to talk to, you can never get him on the
phone” is offered as the excuse.
It is the responsibility of management to inform next of kin.
Telling service providers
• Essential for ensuring decisions are made with the best
interests of the person with dementia and intellectual
disability in mind
• Neglecting to do this may lead to inappropriate supports
and the breakdown of placements
Case Study – Adam
When Adam was first placed in residential care, his diagnosis
of dementia was not disclosed. Adam was placed in a home
with large open spaces where a lot of activity was taking
place all the time. Adam found this distressing and reacted
negatively.
Staff were confused about this and both
residents and staff complained to management about his
poor behaviour. Eventually the placement broke down
completely and his parents were left to find another place for
him. How could this have been avoided?
Keep communication links open
Case Study – Jules
Jules was diagnosed with dementia
three years ago. At the time, a
case manager was called in to help
support staff at his residence to
make
adjustments
and
preparations necessary.
Three
years later the same case manager
was called in to work at a Day
Program.
She noticed Jules
attended and she asked how he
was going. Staff were concerned
that he may be developing
dementia, but were yet to raise
their concerns with his house.
Day
Program
Supported
Accommodation
Service
Telling medical professionals
• Essential for
hospital admissions
• Essential to ensure
adequate monitoring
through stages
(e.g. with regular
practitioners)
Decisions affecting
practice:
Balancing support and
care
Tips for balancing support & care
• Hold regular staff meetings
• Aim to provide a consistent level of
support & care among the staff group
• Provide regular feedback to
management, particularly when the
balance changes
• Communicate feedback from allied
health and medical professionals
clearly to all staff
Decisions at the
organisational level:
Accommodation and
placement options
Organisational policy decisions
Policies should be in place which proactively
address the organisation’s response to a
diagnosis of dementia.
These policies will help to avoid crisis
transitions and will provide clear guidelines
to staff and families about what to expect.
Three directions for organisations
1. Ageing in place (until…?)
2. In-place progression
3. Transition to generic aged care
facility
Deciding which direction to take
involves a number of complex
factors.
Key points for people making this decision
Whatever approach you adopt:
• Avoid crisis transitions
• Consider the best interests of the person
with dementia
• Make a considered decision
• Start planning early
Which approach should be adopted?
Factors influencing management policy decisions:
•
Capacity within organisation:
- size, diversity
- human resources – staff skills, numbers
- funding availability
- physical fabric and layout of houses
•
Capacity outside of organisation:
- availability of dementia specific care
•
Access to medical practitioners and allied health:
- regular basis
- on call basis
Factors influencing for each individual
- desires and preferences of person and family
- starting point for increased needs
Option 1: Age in place
Positives
Negatives
• Preferred option for most
people with a terminal
illness
• Familiar environment
retained
• Existing relationships
maintained
• Minimise stress of moving
• If staff are untrained,
inappropriate care/support
• Need for increased staffing
levels particularly at night –
posing resource issues
• Physical layout of the house
may be inappropriate
• Impact on other residents
• May not be able to access
essential services due to
location
Ageing in place until….?
Requires clear propositions until resources, until choice,
until not optimal care, until death
Option 2: In place progression
Positives
Negatives
• Opportunity to maintain
relationships within
organisation
• Higher staffing ratios
• (Should be a) better
equipped house
• Disability connection not
lost
•
•
•
•
•
•
•
Often in a different suburb, leaving
people disconnected from their
peers
Often initiates change in day
activities
Concern over ability to provide
palliative care
Often grouped with other people
with disability and dementia or
‘behaviours’ or illnesses
Capacity - vacancy management too much or insufficient space
Impact over time of longer term
residents
May not have expected expertise
Option 3: Aged Care
Positive
Negative
• Staff are trained in
palliative care, and pain
management
• Easy access to medical
practitioners and allied
health professionals on a
regular basis
• Thorough understanding
of end stage dementia
• May be closer to family
• Loss of social connections
to house mates and staff
• Often in different suburb
• May mean loss of day
activities as well as home
• Difficult social environment
– not inclusive
• Younger and stay longer
than other residents
• Equity issues – low to high
support needs
Key is for clear process - transparent and planned decision making not as a result of acute health incident or bed blocking issues
What you can do to make transitions easier
 Pack reminiscence materials, such as rummage
box and life story work
 Pack familiar items such as doona covers and
posters
 Take time to introduce the person to their new
surroundings – if planned early there should be
no rush
 Make yourself available for staff at the new
accommodation to ask questions during the
transition period
 Maintain contact through visits, taking peers with
you (if they choose to accompany you)
Group work
Reflect on your role as a support worker
or frontline manager. How can you assist
a person with intellectual disability and
dementia to successfully:
- Age in place?
- Progress within the organisation?
- Transition to an aged care facility?
Bigger Picture Solutions - Government
•
Develop Policy Directions & Articulate Commitments
• Aging in place where ever home is - if appropriate
• Equitable access to health and specialist aged care services
Implementation Strategies.
– Acknowledge premature aging -remove age barriers to ACAS, CACP’s
– Acknowledge as ‘special group within Aged Care legislation - e.g
specialist wings in RAC- build expertise within –numbers too small for
specialist accommodation
– Establish specialist clinics to deal with complex health issues and
diagnosis
– Measures to make health system more accessible – liaison nurses, nurse
practitioners to bridge gap – longer term allied health training
– Potential of the NDIS - Funding Mechanism to take account of changed
needs as age for those within the disability system –
– Specialist consultancy back up to health/ aged care/ disability services.
Mandate decision making processes and individualised planning
•
-
Bigger Picture Solutions - Disability Service System
•Develop Organisational Policies and Capacity for Aging
•Articulate organisational approach and commitments
What does aging in place mean in this organisation
What models will it put in place
Adopt a life course approach to aging – healthy life style, occupation, relationships
across all ages and programs
•Put on place planned organisational response
– Build knowledge and expertise through staff recruitment, training, specialist
positions cross programs/ organisations
– Develop organisational capacity –supervisors and managers
– Build health advocacy skills to leverage for health related resources, as a right
– Develop mechanisms for individualised planning and decision making processes
re transitions.
– Education for people with disabilities about middle age and aging
– Build circles of support and ensure external advocates involved in decisions
– Seize rather than avoid responsibility at individual and organisational levels
•
And finally what outcomes are sought
•Greater clarity about outcomes sought for people with dementia
•A sense of security: attention to physical and psychological needs, to
feel safe from pain or discomfort and receive competent sensitive care.
•A sense of continuity: recognition of the individuals biography and
connection with their past.
•A sense of belonging: opportunities to maintain or develop meaningful
relationships with family and friend and to be part of a chosen
community or group.
•A sense of purpose: opportunities to engage in purposeful activity,
identify and pursue goals and exercise choice.
•A sense of achievement: opportunities to meet meaningful goals and
make a recognised and valued contribution
•A sense of significance: to feel recognised and valued as a person of
worth, that you matter as a person. (Nolan et al. 2001, p.175)
Summary
Many decisions need to
be made for people
with
intellectual
disability once they
have been diagnosed
with dementia.
Individual
decisions
Support workers need to
Support decisions of managers
And families and will often be
Called upon to assist in carrying
Out the decisions
Best
Interest of
Person
Practice
decisions
Organisational
decisions
End of session 8
Recap & Resources
Objectives of this training
 Dementia and its effects on a person with intellectual
disability
 How to modify support to respond to changing needs,
including strategies to enhance quality of life & tips on how
to create a dementia friendly environment
 External resources available for additional support as
required
 Organisational responses to supporting people with
intellectual disability and dementia
The reality of living with dementia
Law 1
The Law of Disturbed
Encoding
Law 2
The Law of Roll-back
Memory
A person with dementia lives in a
different reality.
Our job is to support and work with this
alternate reality.
Modifying practice
Dementia is a progressive disease.
Providing support in this context involves changing
the balance between support and care.
Ultimately, someone in the end stages of dementia
will require specialised palliative care.
What is the difference between current disability support
practices and dementia support and care?
The balance between
support and care shifts as a
person moves between the
stages of dementia
Navigating the system(s)
Providing the best care to someone with intellectual
disability & dementia will involve access to
expertise from three areas:
Disability Services:
expertise in
intellectual
disability
Health
Services:
expertise in
diagnosis and
allied health
support
Aged Care:
expertise in
dementia care
and service
provision
Strategies
Decision making – a collaborative approach
Family
Support
Staff &
Frontline
managers
Medical
practitioners
Aged
Care
staff
Person
with
dementia
as focus
Management of
organisation
Community
health staff
House
mates
&
friends
Resources for
staff groups
For more information
Torr, J.; Rickards, L.; Iacono, T. &
Winters, D. (2010). Down syndrome
and Alzheimer's disease. Alzheimer’s
Australia and Down Syndrome
Victoria. PDF available for dowload:
http://cddh.monash.org/assets/dsadbooklet-final.pdf
Download from
www.cddh.monash.org
Supporting Derek DVD
Available from:
http://www.jrf.org.uk/publications/s
upporting-derek
Recommended
Spark of Life
A Whole New World of
Dementia Care
http://www.dementiacareaustralia.com/
Reflection
Reflection
What is one thing you will take away
from this training which will contribute
to the quality of life for the people with
disability and dementia you support?
Any questions?
Follow up available…
<describe what follow up you can offer staff>
Evaluations
End