The Lovell Foundation - Alzheimer`s Australia

A Consumer Voice about Residential Care
Garry’s mother Jan was diagnosed at age 50 with
Alzheimer’s Disease.
She was a mobile, sporting and ‘outdoors’ person
who was very much younger than other residents.
She needed more staff resources and different
occupation to other residents.
Up to 10 different nursing homes found it difficult to
manage her needs and moved her on.
Jan’s behaviours of concern were managed with
sedation with frequency
Reflecting on being in care himself, he saw some
significant problems –
• Music - Coldplay/U2/Radiohead vs Frank Sinatra
• Outdoors vs being locked inside
• Wife involved, able to stay, involved
• Footy, cricket, tennis vs lawn bowls
• Others around his own age also residing there
Garry’s dream is to see a residential care facility just
for the young with dementia, especially catering to
their needs and lifestyle.
Incorporated as Association in 2009
Membership of over 140 – young people with
dementia and their family members
Awareness raising activities - media
Professional Advisory Group throughout 2010 – to
engage professional input.
Consumer Forum in 2011 to directly involve
consumers in the ideal residential care facility.
That resident may deteriorate more quickly
without familiar supports
How do we keep friends and family involved ?
Financially – can I afford it?
Will the resident be happy?
Losing control of our life together– relinquishing
all rights
Not being fully informed or consulted on residents
care issues
Restricted - locked in, and rigid visiting hours
Safety – escapes of younger people
Staff not appropriately trained in younger onset
Over reliance on medication to manage
behaviours of concern
Assessments – one static view of person
Nursing, clinical environment
Being left alone, lost , with strangers
Losing their dignity
Lack of meaningful activity, purpose, stimulating
Losing friends – they won’t visit these places
Being left without someone looking out for me
Being medicated to manage behaviours
Will my family forget about me ?
The Physical Environment
• Zones – spaces for calm and quiet , active
spaces too
• Sizable rooms for own space, mini apartment
• Spacious and open, sense of freedom but secure
• Natural light and airy
• Aging in Place continuum – all needs catered for
• Single story
• Substantial courtyard and garden area, for
Staffing :
• Staff with specific training in issues of YOD – cuing/
prompting/ engaging/ energetic/ enthusiastic
• Dignity and privacy respected in all aspects of care
• Staff to encourage participating in activities of daily
• Staff who respect intimacy and sexuality
• Staff to have good understanding of the person
• Pets included – very important staff members !
• Encouraging a connection with families
• Staff who encourage the person to LIVE
No visiting restrictions
Involvement – volunteering/ part of the home/
helping with meals and outings / invited to social
activities (BBQ’s)
Playgrounds or spaces for younger children
Privacy for intimacy
Information exchange regularly with family
Charter or mission statement about family
What’s Happening in Australia and Overseas ?
Hammond Care in NSW – our only YOD specific
residential service so far in Australia.
Florence Centre in The Hague, The Netherlands – an
impressive model of support and care from diagnosis.
Young Dementia UK, Witney – developing a residential
service plan to compliment community support program.
Bupa’s Ribblesdale Unit at The Dales Nursing Home,
• Collocated on grounds with Aged Care
• 12 large bedrooms , 9 residents at visit
• 3 staff during day, 2 overnight
• Staff undergo specific experiential and university
• Staff run activities spontaneously
• Large lawn outdoor area, tv room, snack kitchen
• Renovating cabin for relatives, spouses to stay
Merevale Lodge, Fifth Lock Cottage and Coleshill
Rd, Atherstone
• Merevale Lodge -12 beds, Fifth Lock Cottage – 4
beds, Coleshill Rd House – 7 beds
• Training - a specialist program by private owners
– Butterfly technique
• Staffing - 4 (Lodge), 1 (Cottage), 3 (Coleshill)
• Outdoor spaces, small tv activity rooms, 3 dogs
• Community feel, award winning project.
AMA Diem, and the National Reference Centre for
Young Alzheimer’s Patients, Lille.
• Human scale in size
• “Other home” – not a hospital or institution
• No imposed schedules, responsive to the persons
• Have visitors, eat and sleep with friends and
• Staff who do not nurse, but support
• Opportunities to attend community activities
2012 with Alzheimer’s Australia Victoria invited
Residential Aged Care Providers to discuss the needs
of those with Younger Onset Dementia in terms of late
stage care.
Looking for a partner who might consider a specific
build for the young with dementia including best
practice ideas as a pilot project.
Currently discussions underway with one provider
Mercy Health - joint submission for a feasibility study.
Pilot project –
• Supportive environment across illness
• Flexible management of specific needs
• Staff who know disease process
• Place for younger people to LIVE.
There is a great and continuing commitment to see
the development of this pilot service……
and then its replication across the country !!!

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