Knowledge is power

One of the loveliest parts of my work is being able to help people by sharing our experiences as a family, augmented by what I have learnt from my campaigning and consultancy in the 8+ years since my dad died.

I have always firmly believed that there is no substitute for knowledge, information and advice, all of which I’ve identified that we missed as a family during the earlier years of my dad’s dementia, hence my passion to ensure other families are better informed.

 

Online event for BRACE – ‘Who cares?’

It is with these thoughts in mind that I was delighted to be approached to speak at an online event last week for BRACE, a dementia research charity based in Bristol. I became an ambassador for BRACE in 2013, and had my very first speaking engagement at one of their conferences in September 2012, so they hold a very special place in my heart. The event was also a fundraiser, with all proceeds going to BRACE’s vital research work, so for me it was an absolute privilege to be able to do it.

The theme for the online event was ‘Who cares?’, and my main remit – after speaking about our experiences as a family – was to look at care and support for people with dementia, what good looks like, and what tips and advice I would give to families who may be looking for care now or in the future.

It’s a topic I’m asked about extensively, and so I want to share the advice I gave during the BRACE event in this blog. I know from our experiences as a family that we would have dearly loved this type of information when we were charged with looking for care for my dad, and so if this blog helps just one other person it will have been worth writing. As the saying goes, ‘Knowledge is power!’

 

What we can ALL do to ensure our loved ones receive the best possible care and support

I began my section entitled: ‘What we can ALL do to ensure our loved ones receive the best possible care and support’ by looking at managing at home, something most people try to do for as long as possible when they are diagnosed with dementia. There is so much I could have added here, but I chose to focus on peer support and environmental modifications, giving an example from the film Still Alice (that I wrote about here) to illustrate the latter point. I then talked about key elements of good support for family carers. (The links I mention on this slide are available at the end of this blog.)

Next I provided a checklist for seeking care and support. In essence the first three items work together – involving the person, planning ahead and doing your research are all things that should ideally be done long before care is ever needed. What you learn from your research, planning and gaining the person’s insight can then be parked indefinitely until it is needed – hopefully far into the future.


I’m asked a lot about what I personally and professionally look for in a care provider, so I included some points on the next slide that are important to me.


The following two slides were all about different types of care providers, with particular elaboration on care homes as my dad lived in three different care homes and I’m often approached for my tips regarding them. It is important to stress, however, that there are other types of care provision too. One of the things I’ve learnt a huge amount about from my work are options like live-in care and supported living, plus what great domiciliary (homecare) looks like, and it’s vital that families know about ALL of the options available to them.

I then talked about some of the elements of good care that I teach through my training and mentoring work, and allied that with the personal by talking about some of the things my dad loved that I still champion, linking to my blog as follows:

Mealtimes: http://d4dementia.com/tag/eating

Music: http://d4dementia.com/tag/music

Being outside: http://d4dementia.com/tag/al-fresco-living

Love: http://d4dementia.com/tag/love


To finish, I included two slides (I could have put in so many more) that document some of the important things I’ve learnt from my dad’s dementia and from supporting many different people with dementia over the years.

I then added a (very congested!) slide with links to some of the organisations and initiatives I had talked about during my presentation. To make it easier to access these directly from this blog, they are as follows:

Dementia Engagement and Empowerment Project (DEEP): https://www.dementiavoices.org.uk

Dementia Alliance International: https://www.dementiaallianceinternational.org

Dementia Diaries: https://dementiadiaries.org

Dementia UK – Admiral Nurses: https://www.dementiauk.org/get-support/find-an-admiral-nurse/

Dementia Carers Count: https://dementiacarers.org.uk

TIDE: https://www.tide.uk.net

Carers UK – Carers Assessment: https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment

Carers Trust: https://carers.org

Young Dementia UK: https://www.youngdementiauk.org

Alzheimer’s Society: https://www.alzheimers.org.uk

Gov – Social Care and Support Guide: https://www.nhs.uk/conditions/social-care-and-support-guide/

University of Stirling – Dementia Centre (Dementia Environments): https://dementia.stir.ac.uk/design/virtual-environments

Uni of Tasmania – Understanding Dementia MOOC (Training): https://www.utas.edu.au/wicking/understanding-dementia

My Future Care Handbook: https://mycarematters.org/myfuturecare

Alzheimer’s Society – This is me: https://www.alzheimers.org.uk/get-support/publications-factsheets/this-is-me

John’s Campaign: https://johnscampaign.org.uk/#/ 

This is far from being an exhaustive list of links to everything I spoke about or would wish to share with you, but it’s a starting point for anyone with suspected or diagnosed dementia and any family members providing care now or in the future.

My thanks go to BRACE for the fantastic opportunity to speak at this event and to everyone who joined us on the day. I hope that by sharing some of what I talked about I’ve helped you – my readers – in some small way.

Until next time…

You can follow me on Twitter: @bethyb1886
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