Dementia Centred

Kathryn Grace's picture

By Kathryn Grace

September 26th, 2016

A daughters perspective on the carers experience

A Family Carer wanting to use experiences and knowledge to help others in their carer roles.

What did I experience?

I was a carer for my father who lived with dementia for just over 6 years. I looked after my father and supported him to live in his own home as long as was possible and safe for him to do so. It was a journey I’d not travelled before (or witnessed second hand) and I learned many new things both about care, the health system, the community of care in Leeds and the growing dementia care challenge for families.

I looked around my immediate peers and no-one had experienced being a carer or knew much about Alzheimer’s. Maybe some people I’d known in the past had mentioned it briefly but it wasn’t an easy subject and not something to focus on. Thankfully in Leeds we had a supportive GP team, a fantastic consultant psychiatrist, a very patient memory nurse, a richly collaborative homecare agency team, the local Alzheimers’ Society and Carers Leeds family carer support workers… who, like true friends, walked with me through those early days step by step and then through the difficult times.

At the time I worked in the world of technology for a mobile phone company doing a full time role as a Service Design manager. Working full time was a blocker for accessing services… I was at work when services were open. But being ’tech savvy’ I turned to the internet and social media for information and support. In 2009 there was very little info online in the UK and I found carer support info on websites in the USA. I met another carer who lived in Scotland many miles from my home. The hashtag #dementia was a godsend connecting me with information and socially minded people.

Being someone who is usually very organised and is good at researching info and communication (verbal and visual) I was well placed to try find information myself. But even with those skills and the support that was available, I still felt exposed on the journey of dementia with my Dad.

What I did find helpful was:

  • - an American website/email service and info resource for all kinds of carers and dementia carers at each stage of the journey.
  • #AlzChat -  a twitter chat hosted in UK and USA at 8pm every Monday night on various themes linked to dementia and dementia care.
  • Carezone App - a free app on my mobile phone/computer/iPad to help me manage/easily share my Dad’s care and health information.

How could being a family dementia carer have been better?

1) I would have liked the UK to have been more innovative in supporting family dementia carers, but I appreciate now that I was lucky to catch the services and support that I did, as diagnosis and resulting service demand now is far higher than it was when we started our journey. 

2) I used to dream of a John Lewis type department store who can support you at ‘each stage of life’ in the home, but at the time there was nothing on the 'high street' to help. 

3) I used to wonder, had I been pregnant and anxious about that  ‘having a baby’ journey I could have joined the National Childbirth Trust (NCT) with my partner and learned all about the forthcoming journey and been put together with others in the same boat and found support through them for the whole journey and through early years of parenthood. How I wish that kind of group had been possible for family dementia carers (of all ages and circumstances).

4) I used to sit and design the latest mobile apps for a mobile phone operator at work and wonder… how could we use this technology in the care world? I found my way into the New Business & Innovation team for a while but the market was not seen as viable at that time to move on. But I still believe strongly that there are lots of opportunities for digital technology and mobile signal/WiFi providers to enable, even revolutionise, the care world.

Now that my dementia carer journey is over…

What am I doing now?

I continue to use my experience derived from caring for my dad 

I still attend #AlzChat on twitter to hear what innovations are happening in dementia care and also to share hard-earned insights on what caring for a family member living with dementia is really like and how you can make life for your loved one better. Sometimes this group is the only place that I can speak about the tough stuff and I know they understand - it is a wonderful group to be part of.

I am now working again as a Service Design and Innovation consultant incorporating my experience from caring in a variety of projects.

I am collaborating with city leaders, on a voluntary working group, to guide/enable dementia services and 'dementia friendly' services for the 'Assissted Living Leeds' Public Centre.

Kathryn Grace cared for her dad for over six years while he lived with dementia and she continued working.

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