People with dementia should have the same access to community health and care services as others with complex support needs.

People living with dementia may have greater support needs as their condition progresses.

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

Regional offerings

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/

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/

National offerings

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/

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

Healthwatch

Healthwatch is your health and social care champion. If you use GPs and hospitals, dentists, pharmacies, care homes or other support services, we want to hear about your experiences. As an independent statutory body, we have the power to make sure NHS leaders and other decision makers listen to your feedback and improve standards of care. Last year we helped nearly a million people like you to have your say and get the information and advice you need.
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

Living with Dementia Toolkit - downloadable guide

Not everyone has access to the internet so we have produced a Guide to the Living with Dementia Toolkit that can be downloaded and printed off. We encourage peers, family members, and health and social care professionals to make use of this.

The Guide is available in English and in Welsh. It introduces the toolkit and the resources available. For the full experience of the toolkit, you need to look at the website. QR codes link you back to the website at various points. There is a 'How to use QR codes' video lower down the page.

This can be downloaded here: https://livingwithdementiatoolkit.org.uk/home/living-with-dementia-toolkit-downloadable-guide/

Eating and Drinking well: supporting people living with dementia

This training film is the outcome of a two year research project by Bournemouth University, funded by the Burdett Trust for Nursing. It highlights to carers how to improve their practice and develop their knowledge and skills to provide better eating and drinking for people living with dementia. It is linked with a workbook that is available from Bournemouth University National Centre for Post Qualifying Social Work (http://www.ncpqsw.com/publications/)

Films can be accessed here: https://www.youtube.com/watch?v=dlYPTTibTO8&t=28s

Eating and Drinking - information for family and friends as dementia progresses towards the end of life

This booklet has been designed for family or friends providing support for someone living with dementia who is experiencing difficulties with eating and drinking in the later stages.

This booklet may help you to make decisions, provide care, plan for future care, and it may also help to guide discussions with health professionals. You may not want to read all of this information at this time but might wish to come back to this booklet at a later time.

PDF: Eating and Drinking - information for family and friends as dementia progresses towards the end of life - eating_and_drinking_final (1)

Evidence

NICE 2020 'social care for older people with multiple long-term conditions overview': A long term condition is defined as one that generally lasts a year or longer and impacts on a person's life. Examples include arthritis, asthma, cancer, dementia, diabetes, heart disease, mental health conditions and stroke. Multiple means a person is living with more than 1 condition. These guidelines recommend older people with social care needs and multiple long-term conditions have a single, named care coordinator who acts as their first point of contact.

Working within local arrangements, the named care coordinator should:

play a lead role in the assessment process liaise and work with all health and social care services, including those provided by the voluntary and community sector ensure referrals are made and are actioned appropriately.
Offer the person the opportunity to be involved in planning their care and support, have a summary of their life story included in their care plan, prioritise the support they need, recognising that people want to do different things with their lives at different times, and that the way that people's long-term conditions affect them can

The Housing and Living Well with Dementia Report (2021) acknowledges the role discharge teams can have for patients with dementia and outlined some key points: " - the significance of ‘home’ for patients may not be known to staff - opportunities should be created for people to discuss what matters to them in relation to home – both the place and the people – so that appropriate help and advice can be offered. A rights-based approach should be reflected in assessing and managing risks. Hierarchies within hospital settings persist and medical opinions are difficult to challenge.

Best Interest Decisions should take account of as much information as possible about the individual’s known wishes, aspirations and living circumstances prior to hospital admission, not just during the crisis period that may have led up to it. Using a rights-based approach should enable a balanced appraisal of the risks in returning home and being admitted to residential care for example. The need for negotiated support planning and decision making is a multi-agency collaborative effort. Housing staff should be included in discharge planning as equal partners so they can share valuable information about individuals and how they were managing at home - assumptions may be made about what sheltered or extra care housing provide without checking these out with housing staff, so people may be discharged inappropriately .Discharge teams should be up to date in terms of: local housing and support options: access to these options; changes in benefits linked to housing; and eligibility criteria for Disabled Facilities Grants. Building professional networks with local housing providers will bring benefits not only in terms of knowledge of resources but also in mutual trust and confidence when planning for and with individuals. More information here

The Care Act (2014) set out to: Ensure older people with social care needs and multiple long-term conditions are supported to make use of personal budgets, continuing healthcare budgets, individual service funds and direct payments (where they wish to). This should be achieved by giving them and their carers information about different funding mechanisms they could use to manage the budget available to them, and any impact these may have on their carer supporting them to try out different mechanisms for managing their budget while offering information, advice and support to people who pay for or arrange their own care, as well as to those whose care is publicly funded. This includes offering information about benefits entitlement ensuring that carers' needs are taken fully into account. Careplans should include ordinary activities outside the home (whether that is a care home or the person's own home), for example shopping or visiting public spaces. It should also include activities that: reduce isolation because this can be particularly acute for older people with social care, needs and multiple long-term conditions (see preventing social isolation), and should aim to build people's confidence by involving them in their wider community, as well as with family and friends. Professionals should review and update care plans regularly and at least annually.

Research paper: Research has shown that people who have received a reablement service view it positively and see the benefit of improvement in their confidence, functional ability, mobility, independence and wellbeing. It has also been found that even for people who were previously receiving traditional home care services, reablement approaches brought about improvements in independence, which in turn prolonged their ability to live at home and reduce the amount of traditional care subsequently required.