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The Lived Experience Cafe chat

Vicky Willis

Observations:

January, 2019 Live Chat Summary – SE Ontario Lived Experience Network: Was made up of six participants.

January 8, 2019 SE Ontario Live Chat Topic:

Background: Our SE Ontario Lived Experience Network Live Chat Topic comes from Kathy Baker.

Question: 1) With the diagnosis of dementia what were your main concerns around safety and how did you come to identify those risks?

KEY FINDINGS FROM SE ONTARIO LIVED EXPERIENCE MEMBERS:

 

Cooking was a concern that was brought up.  ‘Starting to cook then leaving to do something and forgetting to go back.’ And concerns of weight loss. One solution was to turn the valve off to the source of the propane.  Although safe it is only viable if the source will never need to be turned on again.  Other suggestions were to use the timer on the stove, a cell phone with the timer or watch with an alarm.  But the person needs to remember to use it or with hearing loss may not hear the alarms.  Google Home device sits on the counter and is spoken to.  I just tell Google to set a timer and it can be heard. It is also a good reminder to ask questions like the weather or how many ounces in a cup ...etc   Another suggestion if the person is living close to have them for meals or taking leftovers or meals to them.  ‘Microwave cooking could be employed more.’ Meals on Wheels was also mentioned.  But loneliness could be an issue as well.

Driving is a big issue for care partners.  Independence and self esteem are challenged when the license is taken away.  ‘I also worry about losing my licence and not having the independence to go anywhere. We live rural and it would be isolating’

Independence is a concern. ‘I think people know something isn't right long before loved one's notice but it's too scary to address beacuse of the independence thing’ I think she knew before we noticed the changes and stopped doing things to keep herself safe (and did not want to say anything to us). ‘my Mom and I have had some good chats about what her Mother went through. She has been great to tell me when I feel she needs to lose independence to be safe or needs the care only a LTC facility can offer that I should feel free to implement these things. It takes a lot off my mind and honestly I will do this when its required.’ It is very important to listen and make decisions together. Anger and frustration can occur because they fear and have loss independence. ‘Mom's late onset depression was a sign of early cognitive changes- wishing now my mom would have conceded to accepting treatment sooner. She was often angry and refusing help, refusing advice, pushing us away’

Concerns about wandering can be an issue for care partners as well.  Worried that they will not be able to find their way back home or gone long period of time.  Medi Alert bracelets were somewhat reassuring but using a GPS tracker would be more assuring.  Another program is (Safely Home) through the Alzheimer’s Society. 

·       ‘She developed a bladder infection and became very confused with a delirium and in 40 mins walked 4km last January in freezing cold temperaturs. We live in Trenton and as I was on the phone to the OPP, they actually had located her.  It was very scary for all of us, my mother-in-law especially’

Police, a last resort, can be a positive experience.  Some police have training for dementia encounters. ‘Quite a few stories of frantic police calls by his wife. The police were very good about how emergent it is as well and  also about not making him feel like he had done something wrong.’

Falls are always an issue.  As many people with dementia are elderly or have other health concerns.  Slipping on stairs or floors can pose a problem.  Bright coloured tape on the edge of stairs to identify the different steps have helped.  Not knowing what is happening in the home while the care partner is not there can be solved with surveillance cameras or Life Line.  It can show if someone had fallen. 

PICA (putting non-edibles in the mouth) is difficult as something can go into the mouth so quickly.  We had to make sure that items were put away and out of sight.  Redirecting to avoid anything laying on a counter.

Another concern was about medication.  Remembering to take medication or forgetting that the days medications have already been dispensed is an issue.  Totally taking over the dispensing of medication is the safest but independence is again taken away.

Showering a concern for hygiene, but also leaving the taps on or burning because the water was too hot.  One solution was to make directional signs on the taps.  Turning the hot water down to a temperature that is hot but not scalding.

Setting up a POA and banking is important to do as soon as possible if not before a diagnosis occurs.  To change the POA can be done but very difficult.  ‘We have to jump through quite a few hoops to get my name as the lead contact for his health care’ 

Banking also poses a problem.  Online banking, low credit/debit card limits and no overdraft are good solutions.  ‘It was an easy solution without taking away her independence’  Carrying limited amount of money in wallets.  In LTC having imitation credit cards and Canadian tire money can give someone a sense of independence.

Creativity is a necessity.

‘At Providence Care Seniors Mental Health we are looking to introduce Occupational Therapy into our program so this resource would help to address safety concerns and provide individualized strategies.  There are a number of great resources/books to help address safety issues. 

‘CCAC OT assessed mom for safety in bathroom and meal prep nothing else included in report’

‘the OT and CCAC did not help me with safety or resources’

‘this is good news that we are developing the specialty role of Occupational Therapy to work with people living with Dementia!!’  ‘Great news!’

A Specialty Occupational Role is being developed to integrate into Seniors Mental Health outreach program to work directly with Outreach teams, nurses and psychiatrists.

‘OT is a vital member of the support team!’

‘How did people learn about the safety issues and strategies?  you had previous experience to inform you.  How did others identify the concerns?’

‘Alzheimers Society is wonderful. My port in the storm when all other services were non responsive.’

The Alzheimer’s Society is a great resource.  The internet but be careful because everyone is different and some information may not accurate.

Teepa Snow PAC training is helpful with many ideas of a Positive approach to Care.  She has many YouTube videos that can be accessed. 

 

In conclusion creativity is key to solve issues and concerns as well as access to people with specialty training including OT’s.

 

 

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