I have been away since Friday,  so this weeks musings are slightly different due to the reduced time to prepare.

Living with Dementia, it is important, whether you have the diagnosis or care for someone with the diagnosis to have a break.

Now I know I am lucky that I was diagnosed at an earlier stage and can therefore cope with time away alone for now at least.

The people that care for us, our friends and family, also need time away from our Dementia, for if they do not look after themselves as time goes on, they also become the ones that need to be cared for as well.

Film Trailers


New Petition – Don’t put our NHS up for negotiation

See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

Petition – No more PIP Assessments for People with Life Long Disability or Conditions

Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP


Consultation – Learning disability and autism training for health and care staff

Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

Investigating the impact of stigma on people living with dementia and carers: A questionnaire study PART 1

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers


New Needs of Young People with Dementia 2019

Welcome to the Dementia 2020 Citizens’ Engagement Panel online Hub

Tell us your experience of living with Dementia

Sheffield CCG – Urgent Care Review 2019



Dimensions of Dementia – A Mother and Sons Journey Together


Alzheimer Europe – April 2019

LEAD Coalition News – May 2019

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2


‘Sometimes dementia whispers in my ear, “Nigel, you ain’t strong enough to withstand the storm.” But one phone call, conversation or meeting with my group and I’m able to say to dementia, “I am the storm.”

‘There is no support like peer support – it has saved my life.’

As he plays his part in rallying the growing dementia movement, Nigel wants to ensure that no one is left behind.

‘I want everyone to have a say, everybody to have a view,’ he says. ‘I want everybody to feel valued and wanted – that’s the key. Nobody should feel marginalised or abandoned.

‘We’re all important. We’ve all got something to offer.’

Nigel Hullah’s blog titled We are the storm: The power of a shared voice

New Resources

Young Dementia UK – A decision-making guide for GPs

Dementia words matter: A DEEP guideline on language about dementia