ALZHIEMERS CONFERENCE ADELAIDE - YOUNGER ONSET FTD
A page in the diary "the carer got sick - no help for them"
Written by Faye Saturday, 4 July 2009 01:07
In Adelaide last month there was a international Alz conference. There were many goodspeakers, lots of professionals, but one speaker, in her maiden speech, Alison Easton from the Ella Centre in NSW, bought me to tears. She began with an apology to both the Governement and to the Alzihiemers association - for what she was about to say - that they need to get their act together and support those with younger onset dementia, that she believed that they were failing:- She was a passionate advocate for the plight of carers and the little Govt assitance availed to them
These are some of the stories she spoke of:-
PETER
Diagnosis – After 2 years of being diagnosed with stress, Peter was finally diagnosed with Fronto Temporal Dementia at the age of 54.
Education and Employment – Peter was originally a Health and Building surveyor. He then completed a Diploma of Teaching. At the time of diagnosis he was teaching at TAFE.
Family – Jackie is Peter’s wife and carer, as well as mother to their 4 daughters who were aged 16, 18, 20 and 22 at the time of diagnosis
Interests – family, travel, cycling, jogging, table tennis,
Previous service issues – compulsive walking, incontinent, blocked “strangers” from entering the family
JACKIE - CARER
Peter receives an allocated pension from his super. Jackie gave up work to enable her to care for Peter fulltime.
For Jackie, the most difficult thing in caring for Peter has been the demand of juggling needs – “trying to do what is best for Peter and the family”
MICHAEL
Diagnosis: At 67 Michael was diagnosed with Fronto-Temporal dementia, 8 years after the onset of symptoms. He had previously been diagnosed with ADHD, depression and a cerebral tumour
Education and Employment: Michael was employed at Prince Henry Hospital as a physiotherapist at the time of onset.
Family: Michael’s wife works fulltime as the Manager of Occupational Therapy services at a major Sydney hospital. His children were 17 and 14 at the time of his diagnosis.
Interests: Michael was very involved activities prior to dementia – golf, distance running, spear fishing, soccer, table tennis, badminton, bush walking, reading, travel,
MICHAEL CARER- JOAN
With regard to the YODSS program, Joan said that it “provided ‘normal’ community based, age appropriate activities that he could participate in and enjoy!”
Joan currently uses 5 services each week to support Michael, at a cost in excess of $100 per week.
Michael receives no pension because his wife is in fulltime employment.
When asked what was the hardest part of caring for her husband, Joan replied “Watching him change; his significant losses; feeling impotent (sometimes); his “mad” behaviours; watching his hourly/daily struggle with his world now”.
ROB
Diagnosis: At 63, Rob was diagnosed with Lewy Body dementia, 4 years after the onset of symptoms
Education and Employment: Rob was the Managing Director of a his own Public Relations Company
Family: Wife Jenny, who is an Investment Banker.
Previous Interests: Sailing, flying, cycling, snorkeling, socialising, travelling, crosswords
Previous service issues–absconding, incontinent, non compliant, physically aggressive when frustrated
JENNY _ROBS CARER
Jenny states the hardest part of caring for Rob is -“Seeing my soul mate disappear gradually and being unable to prevent it”.
Rob is not eligible for a pension as Jenny works fulltime
Due to need for constant supervision Jenny, his wife, uses a mix of nine services and private carers, at a weekly financial cost of $340
SYSTEMIC ISSUES
Difficulty in obtaining a correct diagnosis
The need for a navigator or case manager to guide people from the point of diagnosis of dementia to accessing appropriate services
Difficulty in accessing services because people with younger onset dementia have specific needs that are often not met by mainstream dementia services
The difficulties for working carers in getting services to support them to continue working fulltime
The difficulty in juggling care and work commitments
The financial cost of providing care for people with younger onset dementia