THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Below are the 7 July 2015 meeting notes with Rachel Bryant of the Alberta Dementia Strategy and Action Plan. Twelve EODA members were present. One more sent a note that Patricia read, and one more caregiver Skyped in. In total, fourteen caregivers shared their thoughts with Rachel that evening.

Main (black) bullets are comments by different people. The sub-bullets (hopefully white) under those are further comments and may also include responses by other people. Not all contributor names are shown.

Tuesday 7 July 2015 – Southwood United Church – 12 in attendance, plus a letter from Sandra

  • Rachel Bryant – Alberta Dementia Strategy and Action Plan – Alberta Health, Alberta Caregiver, Alzheimer’s AB & NWT, Minster of Health, MofSeniors, et al.
    • Working groups have wrapped up and they now have about 70 recommendations
    • They will finish the strategy in late August, early September
    • Then goes to Cabinet…will take about three months…cabinet
    • They recognize that the primary caregiver is important
    • They also want to know what is currently done right so that they can be sure to keep it up and/or expand it
    • The planned strategy will include a measuring tool to track if their changes are working
  • Sandra: An assessment tool is needed. Consider the SIS tools used by PDB. Consider using a 3C program…Comprehensive community care.
  • Petra:
    • Younger people are more active…they can still do things…vs…85 year olds just sit.
    • We need activity for our spouses because if they have nothing, then that’s when they act up.
    • Lockup does not work.
    • Should be lively and active.
    • We need active day programs … more than two days a week.
    • Staff should be trained in dementia. Should be strong and willing to be active with them…go for a walk
    • Care for the whole family. Making a meal “just for the patient” and not for the rest of the family is pointless. We can cook for five as well as four.
    • Family does NOT get paid for being a caregiver.
    • As soon as her husband goes into a long-term facility, then she loses all his income.
  • Dalyce
    • Disparity between the regions. 18.57/hr in Calgary, 22.70/hr in Edmonton
    • Self managed care for Glen costs her $26/hr to get someone who actually does something. In order to use the money that they give her, she has to pay an extra $1500/month. If she gets family members to help, then they demand the money back.
    • Home care workers are not allowed to drive anywhere
    • The assessment tools are inappropriate. The mini-mental administered by a social worker should NOT trump a neuropsychologist. Why don’t they accept what the doctor says?
    • New Canadians that cannot speak English and get paid minimum wage are the ones to support.
    • They also don’t understand that dementia patients have lost the social skills and may say inappropriate things. The case care worker should know enough to not get annoyed.
  • Nicki
    • The re-assessment requires justification with every agency you deal with. It is degrading to us care-givers that we have to beg for help. Rachel mentioned, (paraphrased) “There should be a central history. The default is that you get help that you can choose to decline, rather than having to beg for help.”
    • Covenant care…you can only pay by cheque. You can only pay at the beginning of the month. Everything is rigid because the end of the month is when seniors get paid. Lack of flexibility.
    • Mike is still allowed to go to the adult day program on Tuesdays and Thursdays. This ends at the end of July. Because you cannot have Mike in a facility and into day program…that’s double dipping.
    • We too had at home care. It was good but it was always different person after different person.
    • Her new home care manager wants to come in to see them today. She only works M-F 8 to 4. Nicki is expected to take time off of her job to meet the work hours of the health care workers.
    • Nicki can’t get any respite on the weekends because “she” is home then and can take care of Ken. She needs to wash clothes, shop for groceries, etc. If she’s out, then her 14-year-old daughter has to look after Mike. The daughter now needs therapy to deal with this.
    • Can you give me a list of all the things you have so I can choose? No list was available. Nicki had to come up with a list of requests.
    • The financial formula used was established in the 80’s. No consideration in the formula for families with children ($75/mo/child maybe).
  • The province needs to understand the concept of “Fit for Purpose.” This can’t be at minimum wage. The idea of being fair is not fair to the patient and the family.
    • Province should look into the Dutch village concept (Hogewey).
    • Rachel says that the man that started the Dutch village is speaking in Edmonton this October.
    • Rachel mentioned Butterfly care (David Sheer - British). Villa Maria in Red Deer and Copper Sky and Lifestyle Options in Edmonton
  • We’ve had literally someone who only came to make lunch and then sat down for the rest of the day.
    • Then my husband ran away from home so for the past ten months he’s been in a long-term bed, which costs WAY, more than the 2000/mo that they refuse to give for home care.
  • Employers do not give good support. She’s in oncology clinical trials. Her boss told her to divorce her husband and walk away. Totally cold hearted!
  • Patricia says that Wouter was totally cut off by the health system. He could have stayed employed in a less stressful job. Something that lets him keep his dignity. Don’t make him feel useless and lose self-respect.
    • Deb’s husband volunteered at the food bank. This was good for Bob’s self-respect…still giving to society.
    • She has not had a holiday in five years.
    • Her caseworker wants only to take her off the list. As soon as she’s off the list, then she needs to start again.
  • To get a diagnosis takes about a year…but have to be hard-nosed with the doctor.
    • To get a two-month assessment, had to go to a private psychologist and pay big dollars. Private is $6000 out of pocket.
    • For Nicki it was a two-year process, but the longest part was waiting to get in.
  • There is a lack of engagement with caregivers.
    • They don’t even try to engage.
    • They just want to sit in a chair. They come late. They leave early.
  • Most people have had more than one caseworker.
    • Caseworkers want to talk about the patient while the patient is there. This makes it very difficult for the spouse to care.
    • Dalyce’s caseworker from the Dementia Care team would not meet with her outside the home so that they could discuss.
  • We need a single point of contact. Having different caseworkers that don’t talk to each other is difficult.

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