I’ve been trying to post more regular boots for World Alzheimer’s Month 2016, and felt it appropriate today to would share one that may be mildly contentious. If it is something I believe needs to be said, then one way or another, I usually get around to saying it; I thought I’d take a risk just for Friday, which is often referred to as #ff on Twitter!!
The ‘dementia health and education sector’ and many academics still seems to prefer to refer to people with dementia as ‘people with challenging behaviours’, and they regularly provide workshops, courses and events for family carers, to support them in their roles.
Of course, it is necessary and important that our significant others who take on the roles of ‘care partner’ get education and support, as it is one very tough gig; I’ve had experience, and know just how emotionally and physically difficult it sometimes is. I also know the love and why we do it, and how rewarding it can be.
But, I do wonder if the sector, or people without dementia generally, ran courses for people with dementia, on how difficult care partners can sometimes make it for us, and if they did, whether carers would feel offended and object?
As always, I am prepared to go out on a limb…
Recently I received yet another invitation to my email Inbox about a workshop for Carers*, as I am still on a number of registers as a carer. These course titles and outlines consistently annoy and offend me, and make me feel like I am to blame for how hard it is for my carer, and how much of a ‘burden’ I am, or will be to him. The course outlines of these types of courses or workshops never make me feel ok… So, in an attempt to place the shoes on the other feet, I have reversed where the word carer was used in the most recent course outline I received, with people with dementia, and vice versa, and added a couple of additional workshop sessions. I doubt it would it feel ok to anyone without dementia, if we ran courses that make it sounds like carers are the problem?
“Understanding and positively managing the changed behaviours of carers”
- Introductions and course overview
- Understanding dementia
- Finding available services and supports for yourself and your carer
- Understanding the carers journey
- Recognising and managing the changed behaviours of carers
- Understanding and supporting their unmet needs
- Asking for help: bringing in the Severe Behaviour Response Team or DBMAS specialists
- When to use antipsychotics: what is best practice
Module 3: Accepting help
- Supporting carers to accept respite
- The benefits of Secure Units for Carers
- Creative strategies for managing their unmet needs
- Dealing with the stress of the changes in your relationship with your carer
Module 4: Supporting carers to positively support you
- Strategies to stop your carer undermining you, talking over you, or underestimating your capacity
- Strategies for you to manage the burden of the negative public discourse by carers (on FB, blogs, in books, etc)
- Supporting carers to provide support for your disabilities and support your independence
- When to refer them to professional counselling or other services
BUT, I do really do it helps people without dementia get a sense of wearing our shoes, with a glimpse from this ‘reversed’ course outline; hopefully they may feel just how uncomfortable it is to mostly be the seen as the ‘problem’.
* I am using the term carer here, as it is the most commonly used term for the person who is an unpaid significant other, family member or friend actively supporting someone diagnosed with dementia. This course (if it were real), could very well apply to paid staff in community, respite or residential care.