Psychological support and education should be provided to those who care for people living with dementia.
Therefore, you may need help adjusting to becoming a carer. Speaking to others can help you focus on your needs. Support should be available to help you learn and understand more about being a carer.
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
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
Weblink: https://dementia-united.org.uk/dementia-wellbeing-plan/
Dementia United
Weblink: https://dementia-united.org.uk/
Housing for People Living With Dementia in Greater Manchester - From Policy to Practice
Weblink: https://dementia-united.org.uk/housing/
LGBTQ+ Online Support Group for People With Dementia and Their Carers in Greater Manchester
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
Weblink: https://dementia-united.org.uk/young-onset-and-rarer-forms/
National offerings
Age UK
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
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
Telephone: contact The Carers Allowance Unit on: 0800 731 0297.
Weblink: https://www.gov.uk/carers-allowance
Carers UK
Telephone: 020 7378 4999
Weblink: https://www.carersuk.org/help-and-advice
Dementia Carers Count
Weblink: https://dementiacarers.org.uk/
Dementia UK
Telephone: 0800 88 6678
Email: direct@dementiauk.org
Weblink: https://www.dementiauk.org/
Lewy Body Society
Telephone: 01942 914000
Weblink: https://www.lewybody.org/
NICE Dementia Guidance
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
Weblink: https://www.raredementiasupport.org/
Social Care Institute for Clinical Excellence - End of Life Care Resources
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)
Weblink: https://www.tide.uk.net/
Young Dementia UK
Telephone: Dementia UK Telephone: 0800 88 6678
Email: direct@dementiauk.org
Weblink: https://www.dementiauk.org/about-dementia/young-onset-dementia/
Healthwatch
Telephone: Call: 03000 683 000 between the hours of 08:30 – 17:30 Monday to Friday
Email: enquiries@healthwatch.co.uk
Weblink: https://www.healthwatch.co.uk/your-local-healthwatch/list
Evidence
World Health Organisation 2019: "Joint carer–care recipient arts groups can help to remove strain from caregivers, provide respite care, and give opportunities for emotional support, practical networking and the sharing of resources, while individual arts and poetry activities can reduce the caregiver’s burden and promote self-acceptance, self-awareness, empathy and catharsis. Arts classes can be used in care settings as a way to understand carers’ needs and impart important caring information. They can also build a positive sense of personal identity and self-efficacy. Finally, activities such as drumming, singing or listening to music have been found to improve relaxation and well-being for carers, and decrease their levels of anxiety and stress."
The British Psychological Society 2014 A guide to psychosocial interventions in early stages dementia pathway: "There are several studies indicating that post-diagnostic groups can provide social, emotional and educational support, a sense of purpose, increased self-esteem and wellbeing, and a sense of belonging that comes from being part of a group of people in similar situations. One study focussed on the possible benefits that post-diagnostic courses have for carers. It found that people who are part of a group specifically aimed at the problems arising for carers of people with dementia had greater confidence, increased knowledge, and enhanced coping skills, and that they felt better prepared for the future."
NICE Dementia assessment management and support for people living with dementia – 1.11 Supporting Carers: "Carers of people living with dementia should be offered a psychoeducation and skills training intervention that includes:"
- education about dementia, its symptoms and the changes to expect as the condition progresses
- developing personalised strategies and building carer skills
- training to help them provide care, including how to understand and respond to changes in behaviour
- training to help them adapt their communication styles to improve interactions with the person living with dementia
- advice on how to look after their own physical and mental health, and their emotional and spiritual wellbeing
- advice on planning enjoyable and meaningful activities to do with the person they care for
- information about relevant services (including support services and psychological therapies for carers) and how to access them
- advice on planning for the future.