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 activities 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 walking

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 living 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 involvement

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, Leeds 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 training 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 lifestyle Have visitors, eat and sleep with friends and family 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 !!!