A huge number of care homes support people living with dementia, but people with early onset dementia can have different preferences and requirements due to their age.
What is young onset dementia?
Young onset dementia, or early onset dementia, is a term for any dementia that a person develops before they are 65 years old.
According to Young Dementia Network, around 7.5% of people living with dementia in the UK see their symptoms start before the age of 75.
Which symptoms a person experiences depends much more on the type of dementia they develop (such as Alzheimer’s disease, Lewy Body dementia etc) than when the symptoms start.
When do people with early onset dementia need to consider a care home?
Dementia is progressive so it gets worse over time. The rate of this decline varies between types of dementia and individuals, but the average prognosis is around 4-10 years. This can be a couple of years longer for people with young-onset dementia.
People with young onset dementia tend to move into care homes at a younger age than others with dementia, simply because the symptoms started earlier.
Determining when it is time to look into care homes is a difficult decision, emotionally and practically. It can depend on many factors, such as how the person’s symptoms affect them, the support they need, their social and financial circumstances and their own wishes.
Ian Burton, from Staffordshire, was diagnosed with dementia aged 50. His wife Wendy made the difficult decision to find him a care home when his symptoms and behaviours meant that they “couldn’t keep him safe anymore”.
Read Wendy and Ian’s story, and further advice, in ‘When is the right time to move into a care home?‘
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Search for care homes near you, compare fees, and read reviews from families to help you choose.
Does young onset dementia require different care than dementia in older people?
People living with young onset dementia can get on very well and receive excellent support in a standard residential or nursing care home, if staff have appropriate training and experience. There are extra considerations to take into account when supporting a younger person with dementia, such as:
- They may feel isolated, being younger or even a generation younger than most of the other residents.
- They may feel unstimulated or uninterested in the activities available.
- Their mobility may be better than other residents so they may need more space and less support with personal care. Higher physical strength can also be more challenging for staff if the person has violent or concerning behaviour as part of their condition.
Young-onset dementia can particularly affect people with learning disabilities, most commonly Down’s syndrome. In this case, they will need to find a care home that can accommodate both their learning disability and their dementia, with specific training and person-centred care.
Are there care homes specifically for younger people living with dementia?
There are care homes specifically for people living with young onset dementia. They are quite rare, but many care homes are set up to provide support specifically for this type of dementia.
Support particularly for people living with young onset dementia can include:
- Social opportunities with people their own age, including maintaining relationships outside the home. This may include units for younger residents.
- Age-appropriate activities and environment.
- Larger facilities for exercise.
- Extra provision for maintaining independence.
- They may be more tech-savvy than older residents and benefit from technology for entertainment and stimulation.
- Support for different family dynamics. The person may have teenage or even young children, for example.
- Specialist training for staff, especially if residents also have learning disabilities.
Find out more about care homes for younger adults.
How to find a young onset dementia care home
Finding the right care home to meet your loved one’s needs can be difficult, especially when they have needs that fewer homes specialise in caring for.
Carehome.co.uk’s search feature enables you to search for care homes in your area, then filter the results down to Younger Adult Care Homes. Types of care offered are listed with green ticks on each listing card, including Dementia Residential Care and Dementia Nursing Care.
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How does funding work for young onset dementia?
Funding works much the same for people living with young onset dementia as it does for older people.
A key difference is that people younger than State Pension Age can be eligible for Personal Independence Payment (PIP). PIP is a non-means-tested benefit for people living with an ongoing illness or disability. Young onset dementia can qualify a person for PIP, especially for the Daily Living component if they need support with day-to-day tasks. You can continue receiving the Mobility component of PIP if you move into a care home, and the Daily Living component if you are self-funding.
Funding you may be eligible for:
- Local authority funding, depending on your finances. Read more in – Care home fees advice
- NHS-funded nursing care (FNC). Read more in – NHS-funded nursing care (FNC)
- NHS continuing healthcare (CHC). Read more in – NHS continuing healthcare | What illnesses qualify for CHC?
- Benefits such as PIP, Universal Credit or ESA. Read more in – Benefits you can claim in a care home
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