This week I was able to spend some time getting re involved with my Twitter friends, and making new ones, during the latest , and first diversealz chat of the year. The topic this week, was our wishes for 2016 in terms of dementia, and the answers really were varied, and we had a lot more people contributing than I’m used to so I’m afraid I may have missed some answers but here is the gist of the conversation. Feel free to add your own dementia related wishes for the year below in the comments, or on Twitter, Facebook, tumblr. I’m everywhere ;)I was surprised at how long it took any of us to express our wishes for a cure for dementia. The initial focus of the chat was towards making life easier for the pwd and carers. I suppose this is because people are so used to the “no cure” statement that is often alongside a dementia diagnosis that we are all intent on making each other’s lives as fun and meaningful as possible.
The other main areas we covered included raising more awareness, more funding and training to provide more admiral nurses who we all agreed were angels on earth.
We want a stronger light shone on the tricker side of things, such as palliative and end of life care for those with dementia. End of life was a topic I covered in a previous blog post, and remains to this day one of my most read and talked about posts. Also what happens if the Carer dies before the caree? Contingency plans need to be discussed and put in place
Nanny Jean wishes this is the year that people get the help they need and not be left alone which was something echoed on many peoples’ wish lists. Especially after the bbc documentary. Something as small as internationally recognised 24h call lines can help ease loneliness and offer support at both the pwd and carers lowest moments. Most of mine occurred through the night long after most offices are shut and other people asleep.
We also want more focus on traditional as well as non traditional caregiving, ensuring that both are supported and understood.
Many of us still feel prickly at the term suffering when used to describe a persons life with dementia. And we are hoping that this will be the year we focus more on life and living with dementia, rather than suffering from it.
Personally I hope that this is the year we focus on the needs of people with dementia, and their carers/families, rather than dishing out standard care packages. Too many assumptions and generalisations are used to inform the care models and services provided, but as proved time and time again dementia affects us all so differently that it seems ridiculous to react with the same procedure for every person. It may well be time we get the people actually experiencing dementia involved in making policies and decisions. After all “nothing about us, without us”.
We also want better training of health providers in order to help them understand the diverse needs of people with dementia and caregivers. Alongside this, sticking with the professional aspect, we also want to see more activities for people with dementia in Care homes, or more care homes that are prepared and equipped to deal with the diverse needs of those with dementia. Encouraging the care homes to listen to and support the family members who are involved in a residents care. Similarly, better hospital accommodations for PWD to accommodate family carer and otherwise minimize stress on PWD.
Finally, the aspect I think we all felt strongest about. We would all like more focus on unpaid family carers and their needs. Most of us fulfil this out of a sense of duty; family takes care of family, no matter the personal cost. This can be such an emotional drain on a relative and can be detrimental to relationships, to focus on their needs and offer better support and information could help strengthen this resource. I’m still determined to set up drop in centres for Carers and carees alike, and although 2016 May not be the year I achieve this I am hoping someone else will realise the need and step up to the plate.