THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Partner group facilitator Mare asked if Southwood would participate in a study that her group Gerontology Social Workers Action Group is conducting in partnership with Sovial Workers dept of UofC.  This meeting was used as the focus group for care of those families of dementia/alzheimers. We are the 3rd focus group.  The investigators will also interview decision makers and will prepare a policy paper by June 2015. The goal is to engage the community in discussion about long term care and to inform decision makers about the needs. For this project, long term care isdefined as all care from assessment, day programs and support, home care and supportive living.  

Most impressive to me was the clarity of our group in responding to questions.  What are the issues: boom, boom.the 4 issues EODA outlined to the MofHealth in July and then expanded. 

Dignosis:  doctors are not prepared for anyone in their 50s (or younger) to have dementia/alz.  The prescribe drugs for dementia, test for everything else they can think and precious time is lostwhile diagnosis is delayed. There is NO standardized testing, and each test takes months.  Private testing can cost in excess of $5000 IN ALBERTA.  With a diagnosis you are pushed out the door.  Referrals are non-existent or to ASC which most people reported as not meetingour needs.

Treatment/Support:  do all the legal (more articles on this website) now while you can.  The biggest support has been our support group.  There is little support for the caregiver or for the families.  The caregiver typically works, has responsibilities of children, parents, all legal , the house....the list is endless. For day programming and support, almost all directed towards the aged and the infirm.  Most home care staff are poorly trainedand do not engage our loved ones.  Most homne care exists to give the caregiver a break.  We need home care so we can go to work.  Self Managed care works quite well but often adds 5+hours  week in management and planning.  Typically hoemcare pays poorly so the turn over of staff is very high. 

Long term care: funding is based in the physical medical condition of a person one year in advance.  Very little funding for recreation which is what our partners need.  Typically in good physical condition for many years. Activities in care are often inappropriate including coloring, bingo and chair exercises.  Lots of individuals who work in care are great but all seem to work casual.  Facilities try to hire full time as little as possible so they can avoide benefits. There are cultural problems reported ("he is possessed by devils") - a story which was shared through out a facility and encouraged staff to express fear at his actions.   Typcially, even the full time staff are not empowered ro even allowed to do what is right.  AHS seems to be talking "Person Centred Care" a lot, but we are not seeing it in practice. A family does not Have to take first available bed, but moving a person later is very difficult.  The answer to most behavior issues is drugging. There are even reports about restraints/shackles making the situation even worse. 

What do we want?  David Sheard, Silverado Care, Czorny Centre - there are working examples of care that Works! We belive tat services can be provided through the re-allocation of money and care.  Young active people should be together is a start. 

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