3. Connecting people with dementia to support

Access to services and co-ordination

Forward with dementia brings together: current guidance and resources, key research findings and personal experiences to highlight how best to access and co-ordinate relevant dementia services. You can use it to help people living with dementia and their carer access personal support and a toolkit to help them live as well as they can with dementia. You can signpost the person with dementia and their carer to the area of this website tailored for them.

People with dementia and carers tell us that getting support as soon as possible is key but doesn’t always happen. People may not know what services are available or may not recognise their own needs soon after diagnosis. They sometimes feel they ‘go round in circles’ or are ‘just left to get on with things’. Carers may also have different support needs. You can direct the person to different types of support to meet their current and changing needs. This will help them understand how to get the right support to meet their needs to move forward positively with dementia.

Sources of support in this section include:

Dementia support for the person and their carer: how to co-ordinate care and provide support and training for carers

Dementia support services from the point of diagnosis: available health care services, social services and voluntary organisations

Manage dementia support for the person and their carer

Co-ordinating different care services can be overwhelming, particularly with multiple services and providers. Evidence-based national guidance recommends that people living with dementia are provided with a single named health or social care professional who is responsible for coordinating their care. Read the recommendation here.

To co-ordinate care, support, and services on behalf of the person with dementia and their carer, named professionals should:

Assess the person’s needs

Provide information about services and how to access them

Involve the person’s family members or carers in support and decision-making. Read more about decision-making in Start conversations about shared decision making and planning ahead.

Give special consideration to the views of people who do not have capacity to make decisions about their care, in line with the principles of the Mental Capacity Act 2005. See Practical support for shared decision making and planning ahead to move forward with dementia.

Ensure people are aware of their rights to advocacy services

Develop a care and support plan. Direct the person to the Toolkit section

Transfer information between care settings (with consent from the person)

Consider issues of accessibility including:

people without carer support

transport issues

responsibilities such as childcare and work

people with learning disabilities, sensory impairment, or physical disabilities

people less likely to access support such as people from black, Asian and minority ethnic groups.

You may be the named professional who has responsibility for care co-ordination or you may support the named person as part of multi-disciplinary working.

Focusing on carer support

Offer carers psychoeducation and skills training. Direct the carer to the Forward with dementia website to help by:

educating about symptoms and changes as dementia progresses. section 3 Carer Managing Symptoms and Changes

developing personalised strategies and building their skills. Direct the carer to the toolkit section

providing care, including understanding and responding to changes in behaviour. Carers – Managing Symptoms and Changes

adapting their communication to improve interaction with the person with dementia. Carers – Talking about dementia

looking after their own physical and mental health, and wellbeing. Carers – Supporting health and wellbeing

planning enjoyable and meaningful activities to do with the person they support. Person with dementia – Supporting health and wellbeing

providing information about relevant services and how to access them. Carers – Plan services for support

Advising on planning for the future. Carers – Making plans and decisions

Ensure that carer support is tailored to their needs, preferences and what they want to achieve – see NICE guideline carer recommendation Section 1.11 . You can:

Direct carers to save information about what is most relevant to them using the toolkit section of the forward website

Support carers to help them support people living with dementia Carer – Managing symptoms and changes

Help them to access support at a location they can get to easily

Provide support in a format suitable for them (for example individual or group sessions, or online training and support)

Ensure support is available from diagnosis

Be aware that carer interventions are most likely to be effective when provided as group sessions. See Carer – Plan services for support for more information

Advise carers about their right to an assessment of their need (Carer’s Assessment). See information details earlier in this section Carer – Plan services for support

Be aware that carers of people with dementia are at increased risk of depression. Read more about depression and management in Carer – Your emotional reaction to the dementia diagnosis

Secure dementia support services from the point of diagnosis

Enable the person with dementia and their carer to engage with support services as soon as possible after diagnosis. This includes providing information about different types of support services, who they are available to, the type of need services can meet and practical advice for making contact.

The support needs of the person with dementia and their carer will change over time. Different services may be involved along the way. Services may be in place short or long term for support. Carers may also need their own support to maintain their wellbeing, which may be managed by another practitioner

Direct the person with dementia and their carer to relevant areas of the Forward website so they can learn more about the benefits of getting early support in place to move forward with dementia – Plan services to get support (person with dementia); and Plan services for support (carers).

Direct the person and their carer to the toolkit where they can save information to about services and create actions to get connected with services.

Help the person access different types of dementia services

The NHS, social care and voluntary organisations are the main providers of health and social care for people with dementia and their carers. These services help people to meet their physical, social, emotional, and financial needs. Services may be national or local.

The NHS dementia guide provides a useful overview of support available for people with dementia and their carers.

Healthcare services

Healthcare services can help meet a range of medical, physical, psychological, and emotional needs. Most dementia post diagnostic healthcare support is provided by community teams including:

GP practices (GP, practice nurses, specialist nurses, social prescribers)

Community mental health teams

Older people’s teams, including physiotherapists and occupational therapists

Speech and language therapy (SALT)

Continence services

GPs can offer a range of dementia treatments and therapies. Read ( Article – Supporting changes due to dementia ) to find out more about current guidance, practice, and suggestions.

Referral systems for support

Make a direct referral for support on behalf of the person and their carer if possible. Although the person can self-refer, they may need support from others such as family members, support services or advocacy services to help them to access services.

GPs, other primary care and secondary care practitioners can make direct referrals for NHS treatments and therapies (some may take self-referrals). These include:

Psychology

Psychiatry: may provide carer courses or post diagnostic support

Occupational Therapy

Physiotherapy

Community Mental Health Teams

Continence support

Older Peoples community support

The person with dementia and their carer can self-refer to some services such as:

Local authority for a Needs assessment (England and Wales) and Assessment of your care needs in Scotland

Age UK provides a postcode finder to help carers access a Carer’s Assessment (Adult Support Plan in Scotland)

Talking therapies to help with emotional support

Support from national dementia charities such as Alzheimer’s Society and Dementia UK

Actions:

Find out if the local memory service provides post diagnostic support and education

Actively follow-up to check services have been provided.

Social care services

People with dementia and their carers are entitled to social care support to meet the need for practical support with day to day tasks, and to help people stay independent at home. Financial support, and social needs such as befriending and activities to support wellbeing and avoid isolation are also available.

Social care is primarily provided through local government or self-funded. It is available for people who need practical support due to a health condition or illness, or to help carers who provide help and support.

Common types of support available are:

Care at home

Meals on wheels

Home adaptations

Equipment and household aids

Personal alarms and home security systems

Different types of housing, such as sheltered housing and care homes

The NHS dementia guide provides an overview of social care.

Most social care services are means tested (dependent on income or assets).

Some support is not means tested. This includes some equipment and home adaptations, benefits, help after coming home from hospital, NHS continuing healthcare, and NHS-funded nursing care in a care home. See the NHS website for details on how to apply for free funding.

Benefits and support

The person with dementia can apply for a care needs assessment to help work out which services and financial support they may be entitled to. Needs assessments are free and available to everyone.

The person will need an assessment to determine if their local authority will provide support such as:

Equipment (walking frame or personal alarm)

Home adaptations (e.g. raised bath seat)

Practical help from a paid carer

Access to day centres and lunch clubs

Moving to a care home.

Needs assessments are provided through local government in England and Wales. You can use the postcode finder to locate the appropriate local authority. The application is then made through the local authority.

Care information Scotland provide advice for getting an assessment of care needs in Scotland.

Carers may also be entitled to separate benefits and support. All carers are entitled to a free carer’s assessment (Adult Support Plan in Scotland). This is different to a needs assessment and focuses on the needs of the person providing support. Carers UK provide information on Carer assessments in England, Scotland, Northern Ireland and Wales.

Actions:

Encourage the person with dementia to apply for a care needs assessment

Encourage their carer to request a carer’s assessment

Private social care organisations

These are national and local organisations who the person can pay directly either through a personal budget or as self-funders to help with everyday living such as meal preparation, washing and dressing through to residential and nursing care. Most will not be dementia specific services but may provide dementia specialism. Some funding may be available via social care services.

Patients and carers can search the NHS directory of residential care homes and nursing homes.

Other commercial sites provide information on home care and specialist care:

Homecare UK is a national site which can help the person find different providers of local dementia support at home.

Helping hands home care are an example of a national organisation who provide local specialist dementia support in the home, as well as other services.

Carehome UK is a national site which can help to find different providers of all care home types including specialist dementia care.

Voluntary organisations

People tell us they find help from voluntary organisations useful and practical. There are a range of organisations providing a diverse range of information and support (e.g. websites helplines and practical support). This meets a range of needs around information, social and emotional support. People can self-refer for this support.

Find leading dementia organisations at The Good Care Group.

The Alzheimer’s society provides telephone support, online forums, face to face and online support accessed through their homepage . They provide Dementia Advisers in some areas of the UK. Search Dementia Connect by postcode to see what is available locally.

Dementia UK provide specialist nurse support (Admiral Nurses) for people with dementia and their carers. The national helpline is free. They provide ‘virtual clinics’ for online access to Admiral Nurses too. Find out if there are Admiral Nurse services in your area .

The Lewy Body Society offers support specifically for people with Dementia with Lewy Bodies and their families.

Rare Dementias Support provides information for people with rarer types of dementia such as frontotemporal dementia, posterior cortical atrophy and primary progressive aphasia.

Young Dementia UK focus on providing people with young onset dementia.

There are well established national voluntary organisations which are not dementia specific but offer support for people living with dementia such as Age UK and Carers UK.

National voluntary organisations may have local branches which can be found through their national web pages. There are also many independent local voluntary dementia support groups. Dementia roadmap can help you to find out if services are available in your area

Actions:

Signpost the person and carer to the Alzheimer’s Society website and Helpline

Signpost the person and carer to Admiral nurse support via Dementia UK

Access Dementia Roadmap to find out what services are available in your area.