Moving to long-term care: What do persons with dementia want?

Apologies for the radio silence. Life has been a little wild of late. In May, I moved back to Australia from Canada, into my new house with my boyfriend and fur babies. It has taken me a while to settle in, and feel at home again. Now that things are relatively settled (as much as they can be), I’m hoping to get back to writing on my blog. I started this blog as a creative outlet without the pressures of formal publication, but I have found myself getting antsy about the quality of what I post. So this is me, ripping off the band-aid and getting back to writing for the joy of it. So, here goes…

I have some exciting news! The second paper from my PhD research has just been published!! YIPPEE!

It is titled ‘A qualitative systematic review of experiences of persons with dementia regarding transition to long-term care’ and is published in the journal Dementia.

Prelim principles.png

This paper looks at how we might best support persons with dementia throughout transitions in care. Given the social undesirability of living in long-term residential care, we find that these transitions can be really challenging for persons with dementia and family alike.

We currently have very little knowledge about how best to support persons with dementia throughout transitions to long-term care (LTC), and especially not from their perspective. What we did was look for studies reporting on the experiences of persons with dementia of moving to long term care. We found only 7 studies (!!!) in existence that looked at this issue. From these accounts, we derived 5 preliminary principles for care (see image).

We also derived 4 recommendations and priorities for future research in care transitions:

  • Persons with dementia can share their perspectives and experiences… so we should ask them to!

  • Persons with dementia have seldom been asked to share their perspectives and experiences… but need to be asked if we intend on providing person-centred care.

  • A need to challenge use of proxy-reporting practices in experience-based dementia research… because these reports may not be an accurate representation of a person with dementia’s experience).

  • A need to explore shared transition experience… because these transitions affect the person with dementia and their family care partners.

I could not be more excited for this piece of work to be out in the big wide world. For me, it represents a lot of hard work and determination, a committment to maintaining my integrity, and a deep desire to listen to, and act on, the voices of persons with dementia. I first submitted this paper for review in November of 2017. It was rejected and I got quite sad about it. After feeling sad for a bit, we reworked it significantly and resubmitted it an entire calendar year later. This time the feedback was more positive. We responded as quickly as possible to reviewer comments and it was eventually accepted.

As I spend more time in the world of academia, I realise that each time I get knocked back, in whatever form that may be, the time between initial sadness and moving forward is getting shorter and shorter. BUT I know that I really do NEED to have a short period of feeling sad. It is only natural!

But for now, I am elated! Excited to hear what others think of our work, and to see how these recommendations inform practice out in the ‘real world’.

Jessica Young2 Comments