Category: Featured

UK Support

This article will be gradually updated as I learn more.

There is little signposting of the support and services available for as diagnosis of Dementia so I have tried to bring what I can into one place.

Alzheimer’s Society – National – Helpline, online forum, face to face support: Website

Lewy Body Society – National – Helpline, online information: Website

Rare Dementia Support – London – Links to online support: Website

Young Dementia UK – National – Member Network: Website

DEEP UK – National – 100+ local groups: Website

Dementia Diaries – National – Online diaries of people with Dementia: Website

Join Dementia Research UK – National – Important we all take part locally: Website

Age UK – National – Information on care and support: Website

Barnsley Independent Alzheimer’s and dementia Support – Local: Website

Carers UK – National – Online Forum, Help and Advice for Carers: Website

Carers Trust – National – Support and Advice: Website

Tide – National – Building a UK wide social movement of Carers: Website

We Care Campaign – Campaign for unpaid carers: Petition Twitter @WeAreCarers 

Social Media – National – Source of support and information: Twitter Facebook etc

Blogs – National – Many blogs about peoples lives with Dementia ie: Wendy Mitchell

Innovations in Dementia – National – Support people living with Dementia: Website

Dementia UK – National Charity that provides support and Admiral Nurses: Website

This is not a complete list, there are many other wonderful organisations out there, if you wish to be included let me know.

 

Rights

This article will be gradually updated as I learn more.

Along with the move away from awareness to action by the Alzheimer’s Society, there seems to be more emphasis on a rights based approach to Dementia care.

As well as the Human Rights convention, the United Nations has the Convention on the Rights of Persons with Disabilities (CRPD)

The WHO has also published a booklet about Ensuring a Human Rights Approach for People Living with Dementia.

Dementia Alliance International have published a booklet The Rights of People Living With Dementia: From Rhetoric to Reality.

Naturally. there are concerns about a rights based system:

The UN CRPD Committee raised concerns in 2017, which can be downloaded here, about how the UK upholds rights and the UK Government response is here.

The Journal of Medical Ethics, published an article debating the implementation of Article 12 of the CRPD.

Examples where rights are not respected could include

Alzheimer’s Disease International responds to France’s Ministry of Health and Solidarity’s announcement to cease reimbursement of four anti-Alzheimer drugs.

The unfair system of UK Prescription Charges,

Post-Diagnosis Support

This article will be gradually updated as I learn more.

If you talk to people reader, the overwhelming comment is the lack of a timely diagnosis, support and signposting of services from seeking a diagnosis, through the point of diagnosis and beyond.

Commonly there is a feeling likened to stepping off a cliff into a dark hole.

There is now a recognition of the importance of a timely diagnosis followed by post-diagnosis support, from the point of diagnosis, for the person living with Dementia and their family/carers.

The World Health Organisation has a Global Action Plan 2017-2015 for Dementia.

During the Alzheimer’s Society’s Dementia Action Week, Dementia Alliance International announced the formation of the Global Rehabilitation Alliance.

The Centre for Economic and Social Research in Ireland have published a report on Post-Diagnosis Support for People with Dementia and their Carers

Although my wife and I, haven’t had support from the NHS, apart from my Neurologist  or local Council, which should be equal to that of other Chronic Diseases, we received important support and empowerment from the A Good Life with Dementia Course, from my friends and organisations on Twitter and from Voluntary organisations like the Alzheimer’s Society, DEEP UK, Young dementia UK, Dementia Cafe’s et all.

A Petition for a Carer’s Strategy

Katy Styles has been running a petition for there to be a Carers Strategy not a Carers Action Plan.

The Government has published a Carers Action Plan 2018-2020, which doesn’t go far enough to provide the right level of support for paid and unpaid carers.

With the Green Paper on Social Care delayed until the Autumn it is important for the Government to realise that 6.5m unpaid carers want action not a plan.

Local Authorities such as Bury, Leicestershire and Torbay are working on local strategies instead of plans, so why cannot there be a national one.

Campaigner Katy Styles hits out at ‘inhumane’ Personal Independence Payment rules for disabled people: Kent Online

Katy & Mark Styles in the Guardian

Please take the time to sign the petition, it only takes 2 minutes.

The Petition ended on 22nd July 2018.

Thank you