Getting services in place for you and the person you support as soon as possible after diagnosis is an important part of making plans. Arranging support now, will help you and the person you support to manage life and prepare for the future with dementia.
Use services to stay independent and prevent becoming overwhelmed
People are often reluctant to use services at first. The person you support might be worried about giving up their independence. You, or they, might worry about affording support services or think that services are only for people who can’t manage. However, most people find that getting services as soon as possible helps them to keep independent and well and helps carers to keep providing the support they want to. It also means you know where to turn if things change or you suddenly find you need practical or emotional support.
Peter made endless phone calls between different departments of the local council to try and work out what benefits his wife might be entitled to. He found this stressful, whilst coming to terms with Judith’s diagnosis and managing her medical appointments. Peter didn’t realise that they could have had support from an Admiral Nurse right from the start to help with this sort of thing. The Admiral Nurse also helped Peter to work out which benefits he was entitled to as a carer and how to apply for these.
Here are some important things you should know about getting services in the UK:
- The system is not user friendly and is difficult to navigate alone.
- There can be a long wait (a year and more) between applying for services and getting services in place.
- Getting funding for services is means tested (based on income and savings) and you or the person you support may have to pay for the services.
- Services are meant to be ‘consumer directed’, this means you should have a say in what help you get, who gives you that help, and how you get it.
- Companies vary in the quality of services they provide.
- Many staff receive minimal dementia training and will not be specialists in dementia.
Start your own dementia toolkit
Managing different services and support
Arranging and managing different care services can be overwhelming. This can be particularly difficult when different services provide support.
National guidelines in England, Wales and Northern Ireland state that you and the person you support should have access to a named lead professional who you can go to first and access easily. They will be your ‘care co-ordinator’. Access the recommendation here.
Your care co-ordinator should:
- Be the named person who takes the lead on organising the person’s care. This might be their doctor, practice nurse, social worker or another professional
- Arrange an initial assessment of the person’s and your needs
- Give you and the person you support information on what services do and how you can get them
- Involve you, and the person you support. The person must give their consent to involve you in decisions about their care
- Make sure you and the person you support are aware of your rights to advice services and independent advocacy (someone to act on your behalf)
- Develop a plan for the person you support and review this
- Give the person a copy of their care plan.
If you live in England, Wales or Northern Ireland and do not have a single, named care co-ordinator, ask the doctor for help to find someone to co-ordinate the care of the person your support.
In Scotland Scottish Intercollegiate Guidelines Network (SIGN) guidelines apply.
Types of services
The NHS, social care and voluntary organisations provide care and support to help manage dementia. They can offer services to help meet different needs you and the person you support might have. These might be:
- Physical needs (health and other conditions you/they might have)
- Social needs (seeing family and friends, getting out and about, and meeting other people)
- Emotional needs (mood, feelings and getting along with other people)
- Financial needs (Managing money, benefits and other financial matters).
There are national and local services. Your doctor or the doctor of the person you support will need to make referrals to most services. Some services are available through self-referral. Read more below about getting or making your own referral.
The NHS dementia guide provides a useful overview services that can support the person with dementia.
They also provide advice for taking care of yourself as a carer.
Healthcare services can help with medical issues, physical and mental health. Your doctor, or the doctor of the person you support will be able to guide you to the right services and teams who can help. These might include:
- GP practices (GP, practice nurses, specialist nurses)
- Community mental health teams
- Older people’s teams, including physiotherapists and occupational therapists
- Speech and language therapy (SALT)
- Continence services.
The doctor can tell you and the person you support about treatments and therapies for dementia. This might be medications, groups you or the person can join, and services which can help with daily activities such as occupational therapy.
The doctor can also tell you about services to help the person you support with their mood, feelings and the way they act. Your doctor may be able to make a referral for psychiatry or psychology support. These services may only be for a limited time. As a carer you may find services to help you manage your mood and feelings just as helpful and can ask for your own referral.
Social care services
Social care support can help with day to day tasks and can help the person to stay independent at home. They may be entitled to financial benefits to help meet the costs of equipment and care, services such as befriending and activities to support their wellbeing and keep them in contact with other people. Find more out about help with day to day tasks in Managing dementia at home.
Social care is either provided through the local government (council) or you or the person you support may have to pay for some services. It is available if the person needs support to help with their dementia or other health conditions or illnesses they might have. Social care may also be available for you as a carer.
Examples of support available include:
- Care at home
- Meals on wheels
- Home adaptations such as ramps, stair lifts, grab rails, baths and walk-in showers
- Equipment and household aids such as chairs, toilet seats, and kitchen equipment
- Personal alarms and home security systems such as fall alert pendants
- Different types of housing, such as sheltered housing and care homes
- Financial support.
The NHS dementia guide provides an overview of social care.
Most social care services are means tested (dependent on income or assets such as savings and property). However, there is some support available which 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 you support 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.
Age UK provide helpful information to help prepare for a needs assessment.
They will need an assessment to work out if their local authority (council) will provide support such as:
- equipment (walking frame or personal alarm)
- home adaptations (such as a 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 (council).
Care information Scotland provide advice for getting an assessment of care needs in Scotland.
As a carer, you may also be entitled to additional financial support. All carers are entitled to a free carer’s assessment (In Scotland this is called an Adult Support Plan). This is separate from the care needs assessment for the person you support. A carer’s assessment focuses on your needs as a carer.
Carers UK provide information on Carer assessments in England, Scotland, Northern Ireland and Wales:
National guidelines in England, Wales and Northern Ireland also make recommendations for carer support.
You may also want to build these recommendations into your own support plans. They recommend that carers should receive:
- Education, support and training to understand and manage dementia
- Advice on how to look after their own wellbeing
- Information to find and get carer support
- Advice for planning for the future
- The right to a carer’s assessment
- Assessment of needs for short breaks.
This support should fit with your own personal needs and preferences, be available from diagnosis, and easy for you to get to or access.
Private social care organisations
These are national and local organisations who provide help and support. Social care services may pay for some of this care or this may have to be paid for by you or the person you support. These services can help with everyday tasks such as making meals, getting washed and dressed. Private organisations also provide residential or nursing care when people are not able to live well at home. Services are often not just for people with dementia, but they might provide some specialist dementia care.
Commercial sites provide information on home care and specialist care such as:
Homecare UK is a national site which can help you 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 you find different providers of all care home types including specialist dementia care.
Carers tell us they find help from voluntary organisations useful and practical. There are many national and local organisations who provide information and support for dementia. They offer websites, telephone helplines and practical support. You can contact these organisations yourself to see how they can help. Read more about the help and support you can get from different organisations for example to help you to come to terms with the person’s dementia diagnosis:
Here are some organisations you might find helpful:
- The Alzheimer’s society provides telephone support, online forums, face to face and online support. You can find all of these services through their homepage. They also provide access to Dementia Advisers in some areas of the UK. You can search by postcode to see which services are available in your local area.
- Dementia UK provide Admiral Nurse support for people with dementia and their carers. The national helpline is free and available to everyone. They also provide ‘virtual clinics’ , however in person nursing services may not be available in your area. Find out if there are admiral nurse services in your area.
- The Lewy Body Society is an example of an organisation which 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 support for people with young onset dementia and their families.
- There are organisations which offer support for dementia, but are for everyone, such as Age UK.
There are also organisations who focus on supporting carers. They can provide advice, practical support, telephone support, training and can help you find out about your rights as a carer.
- Dementia Carers Count is for people who support a family member with dementia. It provides a virtual carers centre, and offers a range of training courses to help you learn more about to manage life with dementia.
- Organisations such as Carers UK and the Carer’s Trust support carers with a range of conditions and are not just for dementia. However, they may have some dementia focused support.
National voluntary organisations may have local branches. These can be found through their national web pages. There may also be independent voluntary dementia support groups in your area. Ask the GP or another professional such as a social prescriber or dementia navigator at your GP practice for information.
Understanding the system to get support services
The help and services you and the person you support need is likely to change over time. Different services may be involved along the way. You may have some services for a short time or for as long as you want and need their support.
The person’s doctor is likely to be the main person who arranges services and support. However, it could be someone else such as a practice nurse, a dementia advisor or an admiral nurse. Your own doctor will need to refer you for any support services you need as a carer. Depending on your relationship with the person you support, this might be the same doctor.
Referral systems for support
Ask the doctor to make a direct referral for you or the person you support. If the person you support has to self-refer for a service, you, a friend, a healthcare professional or advocacy services may need to help.
The doctor and other healthcare professionals can refer you or the person you support for NHS treatments and therapies such as:
- Occupational Therapy
- Community Mental Health Teams
- Continence support
- Older Peoples community support.
You and the person you support can self-refer to some services such as: