Carers Trust Wales launch new guide to support carers looking after people with dementia

Carers Trust Wales have today published Caring for someone with dementia: A guide for family and friends, a new and much-needed resource to help the thousands of people across Wales who currently care for someone with dementia.

One in 14 people over the age of 65 currently have dementia¹. With Wales’ population of older people set to increase to nearly one million by 2050 there is a growing need to ensure the unpaid carers they rely on get the right support at the right time.

Over 60%² of people with dementia live in the community and rely on family members or friends to help them with day-to-day tasks, such as cooking, dressing, and taking medication.

The coronavirus and lockdown has had a profound impact on the support available for people with dementia and those who care for them. The closure of day care centres and limited face to face support has in many cases amplified feelings of loneliness and isolation. For too many carers, the pandemic has meant caring for someone in declining health with less support than ever before. 

Dai, from mid-Wales, who looks after his grandmother said:

“As a carer, I spend most of my time alone in the house, with my grandmother as she might need my help during the day or night. She has an alarm to press which lets me know she needs assistance so I can’t go far. Recently, she called me 39 times over the course of 60 hours – I couldn’t get any rest at all.

The pandemic has made my isolation worse, I can’t get out to do the things I enjoy nor access the short breaks that I value, and need to maintain good mental health. I join in weekly online carers groups so I can speak to others online instead”.

Dai is supported by a carers service that provides advice and assistance to help unpaid carers to look after their own wellbeing and do the things that matter to them such as continuing or taking up education, employment or hobbies.

Network Partners of Carers Trust Wales offer carers a wide range of services, including emotional support via talking therapies or weekly drop-in sessions, through to practical help such as access to emergency grants or transport to attend medical appointments. Carers who look after someone with dementia make up the largest cohort of people supported by Network Partners in Wales³.

Gwenno Davies, Carers Trust North Wales said:

“The pandemic has been devastating for families, including those who have lost their loved ones to coronavirus. Whilst we can’t offer some services currently, such as clubs for our members at our centre, we’ve adapted fast and are still there for carers.

I’ve been giving advice via telephone for concerns carers have, such as how to cope when their spouse will not eat meals they have prepared, helping them complete paperwork digitally, or reassurance and practical help if the person they care for has been admitted to hospital”.

The new guide is an invaluable resource for carers of people with all types of dementia, including young onset dementia, at whatever stage in their caring journey they are. The guide is full of useful information including practical things like what to expect in the early stages of getting a diagnosis, advice about managing medicines, and thinking ahead to financial and legal matters. The guide also addresses some of the emotional challenges of caring, including top tips from other carers and information about where to find help and support.

Age Cymru and Carers Trust Wales are working in partnership to develop person-centred service models to identify, and better meet the needs of older carers and carers of people living with dementia, funded by the Welsh Government Sustainable Social Services Third Sector Grant. This guide will be distributed as part of this project and additional resources will be developed to support its use over the duration of the project

Access to reliable and timely information and support is critical for carers and the new guide will help to make sure that as many carers as possible can get the information they need at the time they need it.

Ian, who attends Carers Trust North Wales’ Taith Ni group worked with Carers Trust Wales to help shape the guide comments:

“As carers, we’re the experts in caring.  In the carer’s clubs we laugh and chat, but also share information that can sometimes be so hard to find, especially when you’re exhausted. The advice from other carers in the Carers Corner was the biggest help to me. It made me realise I was not alone. It helped me formulate positive and practical plans and not just sink into a pit of despair.

Being able to contribute my experiences to the new guide by Carers Trust Wales means a lot to me, as when my wife first received a dementia diagnosis, I urge everyone who is a carer or works with carers to get a hold of this guide – it’s full of gems of advice”. 

Simon Hatch, Carers Trust Wales, said:

“We are grateful to The Shaw Foundation for funding this essential guide that will enable carers of people with dementia to access information about caring, and information about the support available to make sure they are looking after themselves too.

“The pandemic means people are caring for many more hours a week than they were previously, often for individuals whose health has deteriorated and care needs have grown. Carers are not getting the breaks they need, and many are reaching crisis point before they are identified and offered support.

“With strong partnerships with health and social care organisations across Wales, we look forward to sharing this valuable resource widely so carers know what support they are entitled to, and how to access it.”

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Notes to Editor

For further information, please contact, Kate Cubbage, Head of External Affairs on 07842 581 935 or kcubbage@carers.org

Looking after a person with dementia is available to download from: www.carers.org/wales/dementia-carers.

The Shaw Foundation partner with start-ups and established organisations to promote innovation in improving the quality of care services available to older people, to support the professional development of people in medicine and care professions, and to advise people how to procure and fund their care.

Age Cymru is the largest charity working with and for older people in Wales. Age Cymru partners provide vital services directly to older people in the community to improve lives. Age Cymru’s vision to create an age friendly Wales. You can find out more from www.agecymru.org.uk or www.twitter.com/AgeCymru.

About Carers Trust Wales

Carers Trust Wales is part of Carers Trust, an ambitious national charity committed to improving support and services for unpaid carers by: 

• Recognising and celebrating the essential contributions carers make  
• Raising awareness of the barriers faced by carers of all ages  
• Working with decision-makers to ensure that appropriate support is available to empower carers to live happy and fulfilling lives  

We work with Network Partners - local services that deliver direct support to carers - making the most of our collective experience, expertise and innovations. 

¹www.nhs.uk
²www.alzheimers.org.uk
³Carers Trust Network Partner Survey (2020)