THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

6 regular members, 1 new member, Deb skyped into meeting

Guests:  3 respresentatives from AHS Home Care – Dementia Care Team

                Leslie, Kim and Terry

Meeting started with intro of new caregiver to our group and then intro of the Dementia Care Team from AHS Home Care:  Leslie, Kim and Terry.

The team’s focus is the caregiver rather than the partner.  There must be a referral from the Home Care Manager who is assigned to the Partner.  There are some qualifications.

The dementia team have heard of the need for a day program for Early On-set Alzheimers/dementia.  The program outlined by VON is already limited because they have said the most they can accommodate is 12 people.  Team asked what was needed at the program

·        Opportunity for volunteer work

·        Lots of opportunity for exercise/activities that are appropriate – hiking, going out to interesting places, being in the community

·        Cognitive work – discussion about the news of the day, what is going in the world, in Calgary

Further discussion was about increasing advocacy for the day program.  Kim had written a letter which was circulated to the group.  It is hoped that others will write a similar letter; (can be shorter and less specific, whatever you are comfortable with).  Craig has volunteered to gather the letters and present them to their Home Care Manager who he has confidence will advance the letters. 


Some of the group relayed some issues they were having.  

The team recognized there are significant problems in getting home care in place including the time to get a diagnosis.

Open discussion re diagnosis/some issues:

·        Looking back some caregivers believe there were signs 8+ years ago.  The partner was at work, the caregiver worked, everyone busy. It was easy to miss/ignore/assume partners were tired/doing too much etc.   Most people figure it out when the partner loses their job for some reason and then the caregiver starts investigating.

·        Losing a drivers license.  Difficult for everyone, now the caregiver does ALL the driving, the other no longer can do simple errands if they require a vehicle.  And what about identification? You can get an Alberta Identification card – they look just like AB drivers license. 

·        Some friends are just calling less, including the affected and spouse in less activities . Why?  They were good friends – people don’t know how to react, what to do, what to say.  For some of us, our partner’s communication skills have deteriorated and they can no longer carry on anything but a very simple conversation.

·        There is a company who offers Music Therapy.  If the group is interested it can be organized for  them to come and be with the partners group one evening. 

·        One of the caregiver reported about a day program her spouse is attending.. He is locked in and then escorted to the bathroom which she thinks is ridiculous.  And they make silly “crafts” such as rag doll scrubbies.  Its insulting and inappropriate.  The partner  attends because he is grateful to be out with people at all. 

Also noted ASC is hosting a community information  forum Jan 26/13.  For details go to their website and read the article “Dr Hogan answers your Qs”.

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