Plan support as soon as possible
Getting services in place as soon as possible after your diagnosis is an important part of making plans. Arranging support now, will help you 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. You may be worried about giving your independence or how you will afford support services. You might 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. It also means you know where to turn if things change or you suddenly find you need practical or emotional support.
Judith made endless phone calls between different departments of the local council to try and work out what benefits she might be entitled to. She found this stressful, whilst coming to terms with her diagnosis. She didn’t realise that she could have had support from an Admiral Nurse right from the start to help with this sort of thing. The Admiral Nurse also helped Judith to work out which benefits she was entitled to and how to apply for these.
Use services to stay independent
People are often reluctant to use services at first. You might be worried about giving up your independence, if you can afford 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 you to keep independent and well. It can also means you know where to turn if things change or you suddenly find you need practical or emotional support.
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 your income) and you may have to pay for your 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.
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 might have. These might be:
- Physical needs (your health and other conditions you might have)
- Social needs (seeing your family and friends, getting out and about, and meeting other people)
- Emotional needs (your mood, feelings and how you get along with other people)
- Financial needs (Managing your money, benefits and other financial matters).
There are national and local services. Your doctor will need to refer you to most services, but you can refer yourself for some. See more on how to get or make your own referral later in this article.
The NHS dementia guide provides a useful overview of services who can support you.
Healthcare services can help with medical issues, your physical and mental health physical. Your doctor 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
Your doctor can tell you about treatments and therapies for your dementia. This might be medications, groups you can join, and services which can help you with daily activities such as occupational therapy.
Your doctor can also tell you about services to help with your mood, feelings and the way you act. Your doctor may be able to make a referral for psychiatry or psychology support. These services may only be for a limited time.
Social care services
Social care support can help you with day to day tasks, and to stay independent at home. You may be entitled to financial benefits to help meet the costs of equipment and care, services such as befriending and activities to support your wellbeing and keep you in contact with other people. You can out more about help with day to day tasks in Managing difficulties at home.
Social care is either provided through your local government (council) or you may have to pay for some services. It is available if you need support to help with your dementia or other health conditions or illnesses you might have. Social care may also be available for family, friends or neighbours who help to support you.
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
The NHS dementia guide provides an overview of social care .
Most social care services are means tested (dependent on your income or assets).
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
You can apply for a care needs assessment to help work out which services and financial support you may be entitled to. Needs assessments are free and available to everyone.
You will need an assessment to work out if your 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).
Carers may also be entitled to separate benefits and support. You or the person who supports you can find information about carer support at Plan services for support – carers.
Private social care organisations
These are national and local organisations who provide help and support. You might be able to get some of this care paid for through social care services
or you may have to pay for these yourself. These services can help you 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 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 the person find different providers of all care home types including specialist dementia care.
People 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 you. Read more about the help and support you can get from different organisations for example to help you to come to terms with your dementia diagnosis. Understanding your dementia diagnosis will help you move forward and also find advice for Adapting to your dementia diagnosis.
Well known national organisations such as the Alzheimer’s Society and Dementia UK provide online and telephone support services. However, face to face support services may not be available in all parts of the UK.
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 people with young onset dementia.
- There are also organisations which offer support for people living with dementia, but are for everyone, such as Age UK and Carers UK.
National voluntary organisations may have local branches which can be found through their national web pages. There may also be independent voluntary dementia support groups in your area. Ask your 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 support you needs 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. If someone helps to care for you, they may also need their own support to help take care of themselves.
Your doctor is likely to be the main person who arranges services and support for you. However, it could be someone else such as a practice nurse, a dementia advisor or an admiral nurse.
Referral systems for support
Ask your doctor to make a direct referral for you. If you have to self-refer, you can ask a family member, friend, a healthcare professional or advocacy services to help you.
Your doctor and other healthcare professionals can refer you for NHS treatments and therapies such as:
- Occupational Therapy
- Community Mental Health Teams
- Continence support
- Older Peoples community support
You 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.
- Talking therapies to help with emotional support
- Support from national dementia charities such as Alzheimer’s Society and Dementia UK.
Managing different services and support
Arranging and managing different care services can be overwhelming. This can be particularly difficult when different services help you.
National guidelines in England and Wales state that you should have access to a care co-ordinator. Your care co-ordinator should:
- Be the named person who takes the lead on organising your care. This might be your doctor, practice nurse, social worker or another professional
- Arrange an initial assessment of your needs
- Give you information on what services do and how you can get them
- Involve you, your friends and family (if you agree) in decisions about your care
- Make sure you are aware of your rights to advice services and independent advocacy (someone to act on your behalf)
- Develop a plan for your support and review this
- Give you a copy of your care plan
If you live in England and Wales and do not have a single, named care co-ordinator, ask your doctor for help to find someone to co-ordinate your care.
Get a plan and support
Ask your GP about getting a care plan using the NHS Dementia guide .