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Young onset dementia: choosing a care home
Our specialist nurses share tips and advice to consider when looking for a care home for a younger person who has dementia.
Dementia is often associated with old age, but it can also occur in younger people. When it develops in people under the age of 65, it is known as ‘young onset dementia’. Around 70,800 people in the UK are estimated to be living with the condition.
Each person with young onset dementia experiences it in their own individual way, but during the later stages most people will become increasingly frail and dependent on others.
For some people, the disabilities and changes resulting from young onset dementia mean that eventually, living at home is no longer an option.
If the time comes when a care home becomes the best option for the person with young onset dementia, it can be a shock to discover that many homes do not accept people who are under 65. This may be due to their age, physical fitness and/or behavioural support needs.
People with young onset dementia may have unique and complex care needs and finding a home that is suitable for them can be challenging. It is advisable to start looking early so you do not have to make a decision in a sudden crisis situation.
You may find that care homes have had little or no experience in caring for a person with young onset dementia and you have to help them to assess the level of support needed. Short respite stays can be a helpful way of determining whether a home is suitable before full-time care is required, although respite breaks are not offered by all homes.
A small number of residential care homes provide accommodation specifically for younger people or have young onset dementia-specific households or units, but they are the exception not the norm. You may find that a home offering age-appropriate care is some distance from where you live, so you may need to compromise on distance and convenience. Or you may have to opt for a home that cares primarily for older people but is willing to be adaptable for a younger person.
Your local authority and the Care Quality Commission website will have information on homes in your local area. If there is a young onset dementia support group or service near you (check by visiting our Find support database), contact the staff or speak to group members to see if they have personal knowledge of local care homes. The professionals who are supporting you may also have suggestions.
The Dementia UK leaflet on Choosing a care home for a person with dementia contains lots of helpful suggestions and information, but here are a few additional points to consider when choosing a home for a younger person:
- Are staff experienced in looking after people with young onset dementia?
- Are there any other younger residents at the home?
- Can it provide a stimulating, age-appropriate environment?
- What activities are provided? Are they of interest, or can they be tailored, for a younger person?
- Can they accommodate the person’s appetite and tastes?
- Are there opportunities to socialise, access outdoor space and be active?
- Do the staff support residents to leave the home to go walking, shopping, to church etc?
- Does it provide access to telephones, the internet and a range of music and TV channels?
- Do they play music, films and provide entertainment from a range of eras?
- Can they accommodate the person’s religious and cultural needs and interests?
- Can they accommodate personal preferences for room décor, furnishings, routines, activities and remaining as independent as possible
- Can they support a couple’s privacy and sexual needs if required, such as a double bed or do not disturb signs?
- If you have children, would they feel welcome and comfortable visiting a parent in the home?
- Does the home provide care until the end of life?
It is a good idea to visit a number of different homes to help you decide what is and is not important. You may need to book an appointment to visit. Ask lots of questions and have a good look around. Find out about the cost of care and any financial assistance you may be entitled to as this may influence your choice of home.
People with a learning disability such as Down’s syndrome are at greater risk of developing dementia at a younger age. If the person has a learning disability as well as dementia, care home staff will need specialist knowledge and skills in order to support their needs.
Some care homes will accept a person with a mild to moderate learning disability, but a specialist home may be more suitable for a person with complex needs.
Moving into a home will impact the person with dementia and the whole family. The person may want to stay in their own home where they feel safe and things are familiar.
Roles and relationships may change and the person’s partner and/or relatives may feel guilt at having to move them into a home. Children may need additional support to come to terms with a parent moving out on a permanent basis.
Encourage family and friends to visit the person regularly and try to involve them in activities and family life as much as they are able.
Some care homes provide support groups for relatives. If there are other younger residents, they may be able to connect you with their family members.
Admiral Nurse Dementia Helpline
0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm)
Admiral Nurse Closer to Home clinics – pre-booked appointments by phone or video call
Dementia UK information
Young onset dementia section
Searchable database of young onset dementia support groups and services
Considering a care home for a person with dementia
About young onset dementia leaflet
Advance Care Planning
Coping with feelings of guilt
Guide to NHS continuing healthcare funding
Life story work
Mental capacity and decision-making
Young Dementia Network
An online community of people living with young onset dementia, their family and friends, and professionals
Independent regulator of health and social care
Care Quality Commission
Independent regulator of health and social care in England
Financial assessments for social care
Getting a social care Needs Assessment
My Home Life – supporting quality of life in care homes
Relatives and Residents Association
The Regulation and Quality Improvement Authority
Independent regulator of health and social care services in Northern Ireland
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Publication date: May 2022
Review date: May 2025