Carer-reported quality of life.

If you care for somebody with dementia your health and wellbeing is equally important, both for your own wellbeing and for your ability to continue caring. Services and support should include you and work to ensure that your quality of life is as high as possible.

For extra information, evidence and best practice please scroll down to the bottom of the page.

Regional offerings

Carers Charters and Toolkits for Greater Manchester

We believe all carers have a right to be respected, valued and supported, equally in their caring role, as experts for their cared for and as individuals in their own right.
Weblinks:
Carers charter: https://www.gmhsc.org.uk/wp-content/uploads/2018/04/Carers-Charter-FINAL.pdf
Greater Manchester working carer toolkit: https://sccdemocracy.salford.gov.uk/documents/s16450/Item%209%20-%20Appendix%20B%20-%20GM%20Working%20Carers%20Toolkit%201%20-%204%204%2019.pdf

Dementia Wellbeing Plan for Greater Manchester; Dementia United

The Greater Manchester dementia wellbeing plan promotes personalised planning conversations with people living with dementia and carers about their needs and wants. The plan ensures an improved standard of care planning for people living with dementia and also facilitates sharing across the system. It will be available as a standardised plan which can be accessed and shared digitally between practitioners; as well as being available from the website for people affected by dementia to be using when having person centred care plan reviews
Weblink: https://dementia-united.org.uk/dementia-wellbeing-plan/

Dementia United

Working towards improving the quality of life for people living with dementia or caring for someone who has dementia, supporting people to live as independently as possible and providing access to services when needed.
Weblink: https://dementia-united.org.uk/

Housing for People Living With Dementia in Greater Manchester - From Policy to Practice

The report and recommendations within it are part of an extensive period of consultation over the past 18 months and including more than 250 stakeholders across housing, health and social care in Greater Manchester, alongside people with lived experience of dementia, carers and loved ones.
Weblink: https://dementia-united.org.uk/housing/

LGBTQ+ Online Support Group for People With Dementia and Their Carers in Greater Manchester

Meets online 1st Tuesday of the month. People with dementia and family/carers are welcome to join.
Contact Maggie Hurley - to get the details to join the meeting.
Email: Maggie.Hurley@ageukoldham.org.uk
Weblink: https://dementia-united.org.uk/news/2021/07/13/new-gm-lgbtq-online-dementia-support-group/

Young Onset and Rarer Forms of Dementia

It is estimated there are over 42,000 people in the UK diagnosed with young onset dementia (a diagnosis received under the age of 65). Having young onset dementia brings unique challenges. We are lucky to have a specialist diagnostic centre at the Salford Cerebral Function Unit however referrals from across Greater Manchester vary. People under the age of 65 are more likely to still be working and possibly have younger families and financial commitments. As young onset dementia is rare compared to dementia over the age of 65, services are often not age appropriate.
Weblink: https://dementia-united.org.uk/young-onset-and-rarer-forms/

National offerings

Age UK

Age UK is the country's leading charity dedicated to helping everyone make the most of later life. Providing advice, support, information, fundraising, local services
Telephone: Advice line 0800 678 1602 free to call 8am - 7pm 365 days of the year
Weblink: https://www.ageuk.org.uk

Alzheimer’s Society

The Alzheimer’s Society provides reliable and up to date information to help you with every aspect of living with dementia.
Telephone: National Dementia Helpline: 0300 222 1122. Open 9.00am. – 5.00pm. Monday to Friday & 10.00am. – 4.00pm. Saturday and Sunday.
Weblink: https://www.alzheimers.org.uk/

Carers Allowance

The main benefit for carers is called Carer's Allowance and it's worth £67.60 (April 2021 – March 2022) to help you look after someone with substantial caring needs.
Telephone: contact The Carers Allowance Unit on: 0800 731 0297.
Weblink: https://www.gov.uk/carers-allowance

Carers UK

Caring will affect us all at some point in our lives. We'll be here for you when that happens. With your help, we can be there for the 6,000 people who start looking after someone each day.
Telephone: 020 7378 4999
Weblink: https://www.carersuk.org/help-and-advice

Dementia Carers Count

Provide free carers courses, support and connecting carers up with a wider network, offer a virtual carers centre.
Weblink: https://dementiacarers.org.uk/

Dementia UK

Dementia UK is a national charity, committed to improving quality of life for all people affected by dementia. They provide Admiral Nurses, who work with family members and carers in all care settings along with a helpline for family members or carers who would welcome accessing advice and support.
Telephone: 0800 88 6678
Email: direct@dementiauk.org
Weblink: https://www.dementiauk.org/

Lewy Body Society

The Lewy Body Society is a charity whose mission is to fund research into Lewy body dementia and to raise awareness of the disease. The website provides information, support, resources and advice.
Telephone: 01942 914000
Weblink: https://www.lewybody.org/

NICE Dementia Guidance

This guideline brings together all the research and evidence which covers assessment, diagnosis, treatment and support. It is for people at risk of developing dementia, people who are referred for assessment, people living with dementia as well as being for family and friends and health and social care staff and commissioners. It aims to improve care by making recommendations on standards people should expect to receive from their assessment, care and support as well as on training.
Weblinks:
We have provided links to the NICE guideline for dementia and a further link is provided to guidance on how to delay or prevent the onset of dementia.
National Institute for Health and Clinical Excellence (NICE) NG16 (2015) Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset: https://www.nice.org.uk/guidance/ng16
National Institute for Health and Clinical Excellence (NICE) (2019) Dementia: assessment, management and support for people living with dementia and their carers: https://www.nice.org.uk/guidance/ng97

Rare Dementia Support

Rare Dementia Support (RDS) is a world-leading, UK-based service led by the UCL Dementia Research Centre (DRC). We aim to empower, guide and inform people living with a rare dementia diagnosis and those who care about them.
Weblink: https://www.raredementiasupport.org/

Social Care Institute for Clinical Excellence - End of Life Care Resources

When a person is living with advanced stages of dementia, all areas of human ability are severely compromised. They have to rely on others for social engagement, occupation and activities of daily living. This section looks at what it's like to live with advanced dementia, communication and the impact on carers.
Weblinks:
Carers’ needs - End-of-life care and dementia: https://www.scie.org.uk/dementia/advanced-dementia-and-end-of-life-care/advanced-dementia/
Advanced Dementia: https://www.scie.org.uk/dementia/advanced-dementia-and-end-of-life-care/end-of-life-care/last-days-hours.asp
End of life care - dying at home: https://www.scie.org.uk/socialcaretv/video-player.asp?v=dyingathome

Together In Dementia Everyday (TIDE)

Providing resources e.g. Life Story work, dealing with living grief, legal information, As well providing a carers development programme, supporting and connecting up carers, sharing of stories - for family members and carers of people living with dementia.
Weblink: https://www.tide.uk.net/

Young Dementia UK

Support for young onset dementia (under 65); providing relevant information and also shares individual stories. This is also part of Dementia UK.
Telephone: Dementia UK Telephone: 0800 88 6678
Email: direct@dementiauk.org
Weblink: https://www.dementiauk.org/about-dementia/young-onset-dementia/

Evidence

NICE (2019) Dementia - Quality standard: "Family members and others caring for people with dementia often have high levels of stress due to the physical and mental challenges of caregiving, coping with other responsibilities, such as work or caring for children, health and mobility problems of their own, or financial issues. This affects their own physical and mental wellbeing. It is essential that informal carers have good support to enable them to manage the stresses and demands of caregiving and to fulfil their role. This includes both support for the specific challenges and practical tasks of caregiving, and support to address their own needs".

Carer-reported quality of life, The Adult Social Care Outcomes Framework 2018/19: This measure gives an overarching view of the quality of life of carers based on outcomes identified through research by the Personal Social Services Research Unit. This is the only current measure related to quality of life for carers available, and supports a number of the most important outcomes identified by carers themselves to which adult social care contributes

Best Practice Resources

My own health and wellbeing (Carers support centre): Carers often neglect their own health and wellbeing as they are busy caring and thinking about the person they care for. Often carers have little free time and therefore stop doing things that they enjoy. Eating well and exercising can also fall by the way side.
Caring for a person with dementia, A practical guide: If you are the main person supporting someone with dementia, this guide is for you. It will tell you more about their condition and how it can affect them over time.
The Triangle of Care, Carers Included, A Guide to Best Practice for Dementia Care (England): The Triangle of Care describes a therapeutic relationship between the person with dementia (patient), staff member and carer that promotes safety, supports communication and sustains wellbeing. This guide is aimed at acute hospital wards and services where a person with dementia may be admitted but their dementia is not the reason for their admission.
Living grief and bereavement, Tide: All the information you find in this booklet comes directly from carers. We tried to reflect different experiences in this booklet. However, we acknowledge that each carer’s journey and experience of professional support is unique.