Caring for someone with dementia can be difficult, both physically and emotionally. There are a number of organisations in the UK dedicated to providing support for people living with dementia, as well as their carers.
From dementia help at home to online dementia resources, there is lots of support available to help families care for someone living with dementia. It might initially feel very lonely as you navigate the early stage of diagnosis, however, whichever type of dementia affects your relative, there will be support for them — and for you.
Dementia support at home
Dementia help at home can be essential for people with mid-stage and later-stage dementia. The below services can help families manage some of the physical problems caused by dementia, as well as help them to live as normal a life as possible.
Admiral Nurses are specialist dementia nurses provided by the charity Dementia UK. They understand that dementia affects both the person living with dementia and their loved ones. Therefore they provide dementia support for the whole family.
The type of dementia support they offer is tailored to the individual and family they are working with. This support includes:
- Developing skills and techniques for communication with your relative
- Providing answers to questions you may have about your relative’s dementia
- Finding ways of managing and alleviating any agitation, fear or distress that your relative may be experiencing.
Specialist live-in care
If your loved one needs round-the-clock support at home, you should consider specialist live-in care. Most live-in care organisations provide specialist care for people living with dementia. Find out more about what a live-in carer can do.
Dementia help and support for carers
For most families, a dementia diagnosis can be overwhelming and sometimes isolating. Depending on the stage of dementia at diagnosis, most people can manage initially with access to good support and expert advice on how to care for their relative living with dementia. However, it is always good to plan ahead, find out how the dementia will progress and what extra support you might need in the future.
There is a lot of online dementia support available. In addition to our own dementia advice, we recommend the below three trusted charities as they also offer in-person support, including day centres, support groups and home adaptations.
The Alzheimer’s Society is the largest dementia charity in the UK. Their website is full of helpful information about caring for somebody with dementia, be they at home, in hospital or in a care home. From advice on washing and bathing to organising social care, the Alzheimer’s Society can help you on your dementia journey.
They have recently launched a new Dementia Connect service, which lets you describe your situation and it will highlight support online that will be relevant to you.
As well as online support, the Alzheimer’s Society provides dementia support in-person in the form of dementia social groups, day care, and support in the community. These dementia support services run throughout the country.
As well as providing the aforementioned Admiral Nurses, Dementia UK provide a wealth of online support for people with dementia and their families. Their website contains advice on a range of topics relevant to people living with dementia, including keeping healthy, carer support, and legal advice.
Age UK is one of the best-known charities in the UK. They provide support on all matters to do with elderly care — and this includes dementia support. Age UK run many community-based services for people with dementia, including those listed below. You can search for Age UK dementia support near your relative on their website.
- Singing for the brain
- Dance for dementia
- Art for dementia
- Seated exercise
- Memory cafes
- Trips and outings
A memory cafe is a place where people with dementia and their carers can meet up for a drink and a chat in a dementia-friendly environment. They are often led by dementia healthcare professionals, and sometimes there are activities and talks for carers.
Local Authority dementia support
Your local authority may provide some or all of the following dementia support services:
Your local authority may be able to provide homecare visits to people with dementia and their carers. If you would be interested in receiving a homecare visit, it is a good idea to register as a carer with your local authority. This can be done by having a carers' assessment.
Some people with dementia require adaptations made to their home to make it safe. This can be because of increased likelihood of a fall, or the need for telecare monitoring.
Day centres for people with dementia
Many local authorities run day centres for people living with dementia. Find out more about dementia-friendly day centres from our Local hubs.
Respite care for dementia carers
Respite care might be provided by your local authority. This would be organised as part of the carers' assessment.
Dementia support groups
There are many community and charity dementia support groups across the UK.
If you live in one of the areas covered by our Age Space Local Hubs then you can find out about local dementia support groups in your area.
You can also visit your local authority or the Age UK website.
Looking after someone with dementia is incredibly tiring and you might need help to maintain your own wellbeing. If you are struggling, speak to your local authority about your eligibility for counselling.
Financial support for people with dementia
People living with dementia are often entitled to financial support in the form of disability benefits. The type of disability benefit that a person with dementia is eligible for depends on your relative’s age. However, people with dementia don’t automatically qualify for these, because tests are required to determine the level of need.
Attendance Allowance for people with dementia
Personal Independence Payment for people with dementia
Personal Independence Payment is available for people with dementia aged under-65 who need more help at home or support with mobility. You must be under pension age when you make your first claim, and it is not means-tested.
Council Tax Reduction for people with dementia
Some people living with dementia may be eligible for a council tax reduction due to their condition. This is known as council tax ‘disregards’. The disregards apply to anyone who meets all of the following criteria, which includes many people with dementia:
- Has a severe impairment of intelligence and social functioning which appears to be permanent.
- Has a certificate confirming this impairment from a registered medical practitioner, usually the person’s GP or consultant.
- Is entitled to certain disability benefits including Attendance Allowance, Disability Living Allowance and/or Personal Independence Payment.
When a person is disregarded from council tax, this has an impact of the other people in the property’s council tax too. People that have been disregarded are effectively ‘invisible’ for council tax purposes. For example, if 1 of 2 occupants in a property is disregarded due to their severe dementia, it will be viewed as if the other person lives alone, making them eligible for the 25% single person’s discount on their council tax.
NHS Continuing Healthcare for people with dementia
Some people with severe dementia are eligible for NHS Continuing Healthcare funding; a package of care that is arranged and funded entirely by the NHS. However, your parent must be assessed as having a ‘primary health need’, and have a complex medical condition and ongoing care needs. This can make it NHS Continuing Healthcare for people with dementia difficult to obtain. You can read more about the process of applying for NHS Continuing Healthcare on the NHS website.
Carers of people with dementia are also eligible for financial support. This financial support is available to people who have had a carer's assessment from their local authority.
Rare dementia support services
Fortunately, there is dedicated support organisations for people with rare forms of dementia.
The Lewy Body Society
The Lewy Body Society provides specialist support to people living with Lewy Body Dementia as well as to their carers. Their website is full of useful information about living with LBD, including how to manage symptoms and the latest research about treatments.
Rare Dementia Support
Rare Dementia Support (RDS) is a UK-based service led by the UCL Dementia Research Centre. They provide guidance and information to people living with a rare dementia diagnosis and those who care for them. The rare dementias they support are Posterior Cortical Atrophy, Primary Progressive Aphasia, Familial Alzheimer’s Disease, Frontotemporal Dementia, Familial Frontotemporal Dementia and Lewy Body Dementia.