I Didn’t Sign Up For This

Episode 25: Lessons from Living in a Care Home with Tuen Toebes - I Didn’t Sign Up For This

This week we interviewed the wonderful Teun Toebes. Teun is now 25 years old and an advocate for the way in which we deal with dementia care, whatever the age of the individual living with it. 
 
Teun says that dementia is a societal challenge - it impacts us all and the way to change the experience of feeling excluded from society is for us all to live together again rather than focus on safety and control. People with dementia want to feel included and not feel like they are 'the other'. 
 
From his experience of sharing a home with those living with dementia in the Netherlands for 3 years, Teun knows this to be true seeing the benefit not only to those living with dementia but in those caring for them too. 
 
As Teun says, good intentions can lead to a reduced quality of life and a more nuanced view is needed.
 
Have a listen and if you want to know more, you can see clips of Teun's work on Youtube and visit human-forever.com to sign up for the newsletter. We hope the film human-Forever will be available in the UK later this year. 
 
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Episode 24: The Culture of Care with David Sheard - I Didn’t Sign Up For This

Jo and Emma chat again with one of their favourite humans David Sheard, Professor of Emotional Intelligence in Dementia Care and expert in all things dementia care related in our view!
 
In this episode David talks about the importance of the culture of care and how this can get lost and why it is important for care culture to be at the forefront of all care settings - the benefits to both those giving and receiving care. 
 
David talks about the importance of being vulnerable and creating real environments where both staff and residents can thrive and be the best versions of themselves, prolonging good quality life, maintaining dignity and connections with others. David shares how a change in culture can make a huge difference to everyone in dementia care and he reminds us of the precious nature of life  that we are only ever a flicker away from not being here ourselves. What matters most is the creation of a feeling of home and small changes can make a huge difference. Take a listen...
 
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Episode 23: The Manor: One Year On - I Didn’t Sign Up For This

In this episode Emma and Jo catch up with Rachel Beckett of The Manor Young Onset Dementia Unit 12 months on from opening. Rachel shares the journey of the last year and how the unit has become a home from home for residents and family members. Rachel shares her learnings and her hopes for the future of Young Onset Dementia care in the UK.
You can follow I didn't Sign Up For This wherever you listen to your podcasts and on Instagram : @idsuft_yoda

Episode 22: Nick Howard: A conversation with a carer - I Didn’t Sign Up For This

In this week's episode Jo and Emma chat with Nick Howard. Nick's wife Linda is in the later stages of Young Onset Dementia and Nick shares candidly about the road from pre-diagnosis to the present, focusing on how he has supported both himself and Linda, the challenges and the strategies that have worked for him. Take a listen its a great episode!

Episode 21: Energy - I Didn’t Sign Up For This

In this episode, Emma and Jo share how they manage their energy and how sometimes keeping going is hard when you are a full-time carer. They'd particularly love to hear if you have any tips or stories you'd like to share about how you manage your energy whilst caring for a loved one with Young Onset Dementia.
You can also find us on Instagram @idsuft_yoda

Episode 20: Young Onset Panel Discussion - I Didn’t Sign Up For This

In this episode, Emma and Jo meet with previous guests David Sheard, (professor of Emotional Intelligence in Care) Jules Knight (Consultant Dementia Nurse), and Jill Quinn MBE (CEO of Dementia Forward. Jane Winteringham Will Writer and expert in Powers of Attorney joins the panel discussion for an engaging conversation about all things Young Onset Dementia.
 
Thank you so much for the many questions we received  - listen to this episode to hear the answers to those questions and more.
 
We will be hosting a panel discussion again in the coming months so if there are any guests you'd like us to chat with or you have questions you'd like answering, do get in touch.

Episode 19: Dr. Carol Sargent - I Didn’t Sign Up For This

In this episode, Jo and Emma chatted with Dr Carol Sargent from Sargent Consulting. 
 
Carol Shared with us the difference between 'Dementia friendly' and 'Dementia Inclusive' particularly in relation to hospitality and holidays. 
 
On the back of Jo and Emma taking their husbands on two different types of holidays this year, Carol shares her thoughts and experience on how best to plan holidays when you want to holiday with a loved one with dementia. She questions the notion of 'challenging behaviours' and asks those working to provide services that might include people with dementia (in other words all service providers) to consider a different perspective. That perspective is that different people have different needs (and that is true for us all). 
 
You can find out more about Carol and how she can help you at https://sargentgroup.consulting/ where you can download your free guide: Holidaying with Dementia - Your 10 Step Approach.

Episode 18: Holiday - I Didn’t Sign Up For This

In this episode, Emma & Jo discuss their recent experiences of booking and taking holidays with their husbands with Young Onset Dementia. 
 
Jo and her son travelled to Lanzarote with Jonny and Emma and Nigel went to St. Ives Cornwall. 
 
Holidaying with a loved one with dementia is challenging. From travel options to accommodation planning and activities whilst on holiday - there's a lot to consider.
 
If you have any holiday stories, tips, or anecdotes that would help our listeners, do get in touch - we'd love to hear from you!

Episode 17: The Manor - I Didn’t Sign Up For This

This week we are delighted to be joined by  Rachel Beckett Chair of Welburn Carehomes Limited and Susan Mckinney (Operations Director). We are chatting about a fabulous innovation - a house they have created specifically for people with young onset dementia.
Rachel shares the inspiration behind creating a dedicated house for those with young-onset dementia as distinct from older client care homes.
It's for people aged 30 years + a home-from-home for permanent residents, daycare, and respite care with or without partners. Rachel shared how the concept is evolving and with the needs of our clients and families. 
Rachel shares the challenges of setting up the house and she and Susan explain the struggles that care commissioners face in dealing with provision because dementia care is met by a limited social care rather than a health care budget. Susan explains listeners should approach their Local Authority for advice about funding support.
Their mission is to keep pushing and share the model as it works! Susan shares the improvements in the resident's ability to communicate because of the environment they are in. The commissioning teams need to be aware of the best interests of the individual clients. 
You can follow The Manor on Facebook https://www.facebook.com/TheManorAtStCatherines
Website: https://www.wellburncare.co.uk/our-homes/the-manor-at-st-catherines

Episode 16: Admiral Nurse Jules Knight - I Didn’t Sign Up For This

Jules Knight Young Onset Dementia Consultant Admiral Nurse
 
Admiral Nurses work across the UK to improve services and resources for young-onset dementia.
 
What is an Admiral Nurse? 
 
A specialist dementia nurse.
Wide and variable working with families with a diagnosis of dementia. In various settings such as memory clinics, hospices, the community, and the voluntary sector. Holistic services for family support. 
 
A helpline supporting families but we also support professionals and people with dementia themselves.
 
The uniqueness of Young Onset Dementia - is so much more difficult as they don’t meet the criteria for support. Struggles with diagnosis - stress relationship issues or work challenges. Social care needs to recognise the prevalence of Young Onset Dementia. Waiting 12 months for an assessment isn’t unusual. Often 4.5 years to get a diagnosis. It’s rare but not that rare. Getting support is the biggest challenge. Referral pathways for younger people are hard to find
 
Jules tells us that on the Young Dementia Network Website, there is a dementia checklist https://www.youngdementianetwork.org/resources/resources-for-people-affected-by-young-onset-dementia/
 
Ask for an appointment to meet separately so you can talk openly with your GP if you are concerned.
 
Connect with other young-onset families. Few services for families for children CAMHs referral not often available and young carers often missed. Schools can be helpful in organising counselling.  Peer support with other families works well.
 
Honesty with children, family, and employers is important it increases levels of support and reduces stigma but doing this can cause anxiety and fear. 
 
Admiral nurses help with practical next steps:
 
Employment and working with the Disability Act and supporting client and employer to work together where possible.
Finances
Benefits these are minefield look for a specialist local adviser. 
 
Building up a therapeutic relationship to allow families to share emotions and grief. 
 
We sometimes support the carer wishing the family to leave the relationship if necessary.
 
Admiral support can be accessed on the phone or online. Even if there isn’t an Admiral Nurse in your area, you can still access their support.
 
You can find out more here:
https://www.dementiauk.org/information-and-support/specialist-diagnosis-and-support/admiral-nurse-dementia-helpline/
 
Listen to the end for Jules' top tips including bonus tip number 4!