Continuing healthcare for dementia is possible, but a diagnosis alone will not get it. NHS continuing healthcare (CHC) is awarded on the basis of needs, not conditions, so the question is whether the care someone needs is mainly health care. Many people in the later stages of dementia do meet that test, and many are turned down when they should not have been.
This guide explains which parts of the assessment matter most in dementia, the evidence that makes a difference, the mistakes that lead to wrong refusals, and how CHC works at home.
In short: keep a detailed diary of behaviour, confusion and night-time needs for several weeks before the assessment, make sure you are invited to it, and challenge any decision that rests on the diagnosis or on needs being “well managed”.
Why a dementia diagnosis alone is not enough
The National Framework for NHS Continuing Healthcare says the reasons for an eligibility decision must not be based on diagnosis. Two people with the same diagnosis can have very different needs, so the assessors must look at what care the person needs and why.
The test is whether the person has a “primary health need”, judged by four characteristics: the nature of the needs, their intensity, their complexity and their unpredictability. In dementia, unpredictability and complexity often carry the case. Someone who is calm in the morning but frightened, aggressive or trying to leave by late afternoon, and whose reactions to personal care change day to day, may need skilled, constant attention even if they are physically quite well.
Which assessment domains matter most in dementia?
The full assessment uses the Decision Support Tool (DST), which scores 12 care domains. For people with dementia, three usually carry most weight, and they often interact.
| Domain | Highest level | What assessors look at |
|---|---|---|
| Behaviour | Priority | Aggression, resistance to care, wandering, disinhibition, risk to self or others, how often staff must step in and how skilled that response must be |
| Cognition | Severe | Memory, orientation, understanding of risk, ability to make basic decisions and to recognise danger |
| Psychological and emotional needs | High | Distress, anxiety, low mood, withdrawal, hallucinations and how responsive the person is to reassurance |
Other domains often feature too. Nutrition may be affected by swallowing problems or refusing food. Continence, mobility and skin integrity become more relevant as dementia progresses. Drug therapies can be significant where medicines for distress or agitation need close monitoring and frequent review.
The behaviour domain is one of the four that can reach a “priority” level, which on its own would normally indicate eligibility. Two “severe” scores anywhere, for example severe cognition and severe behaviour, would also normally indicate eligibility. Below that, the team must still weigh how the needs combine.
Well-managed needs are still needs
This is the point on which dementia cases are most often lost. A care home or family may have become skilled at calming someone, so incidents look rare in the records. The Framework is clear that needs which are well managed still count. The question is what would happen without that skilled care, and how much effort it takes to prevent the behaviour. If two carers are needed to wash your dad because he lashes out otherwise, that is evidence of need, not of a problem solved.
Evidence to gather before the assessment
Assessments are only as good as the information in front of the team. Families who arrive with written evidence usually get a more accurate result.
- A behaviour diary for at least two to four weeks. For each incident, note the date and time, what happened just before, what the person did, what carers did in response, how long it took and how many people were needed. Include nights.
- Daily care charts from the agency or care home: food and fluid, repositioning, continence, falls and incident reports. Ask for copies in good time.
- Medication records, especially any “as needed” medicines for agitation and how often they are used.
- Letters from professionals: GP, memory clinic, older people’s mental health team, district nurses, speech and language therapy, or the falls team.
- Short statements from carers, relatives and anyone who visits regularly, describing a typical day and the worst days.
Describe the bad days as well as the average ones, without exaggerating. Our guide to sundowning in dementia can help you describe late-day changes accurately.
Common reasons families are wrongly refused
Some refusals are correct. Others rest on reasoning that does not match the Framework. Look out for these in the decision letter and DST notes:
- “The needs are due to dementia, which is a social care need.” Diagnosis is not a valid reason, and nor is labelling supervision as social care without explaining why.
- “Behaviour is well managed.” See above: the effort needed to manage it counts.
- Scoring only recorded incidents. If the care records are thin, the diary and staff statements should fill the gap.
- Looking at domains in isolation. Confusion plus poor swallowing plus resistance to care creates complexity that no single score shows.
- Assessing in hospital or during a good spell. The Framework says full assessments should normally happen in the community, not in an acute hospital.
- The family not being invited, or the team simply agreeing the scores without a clear recommendation.
If any of these apply, you can ask for a local resolution review, usually within six months of the decision letter. Our guide on how to appeal a continuing healthcare decision sets out each stage.
Fast Track in end-stage dementia
The Fast Track Pathway Tool is for people with a rapidly deteriorating condition who may be entering a terminal phase. It skips the checklist and full assessment: an appropriate clinician, such as the GP, a hospital consultant, a specialist nurse or a hospice team, completes the form and the Integrated Care Board should act on it promptly.
Dementia is often a slow condition, so families are sometimes told Fast Track “doesn’t apply”. What matters is the person’s current condition, not the diagnosis. Signs such as no longer eating or drinking, repeated infections, sleeping most of the day and a marked decline over weeks can indicate end-stage dementia. There is no fixed life expectancy that must be predicted. If you think your relative is in the last stage of life, ask the GP or community nurse directly whether a Fast Track referral is appropriate. In Worthing and the surrounding area, St Barnabas House hospice supports people at home as well as in its building. Our guides to end of life care at home and dementia stages and 24-hour care explain what to expect.
Continuing healthcare for dementia at home
CHC is not only for care homes. If someone with dementia is eligible and it is safe and practical to support them at home, the Integrated Care Board can fund a home care package, often through an agency, or through a personal health budget that lets the family employ carers they know. For people with advanced dementia, this may mean waking night care or live-in care.
The ICB will look at cost and safety when agreeing the package, so explain why home matters: familiar surroundings often reduce distress, and a move can make confusion worse. Keep the diary going after funding is agreed, because eligibility is reviewed after three months and then at least annually.
In West Sussex, CHC is handled by the Sussex All Age Continuing Care team at NHS Surrey and Sussex ICB (formerly NHS Sussex). Our main guide to NHS continuing healthcare at home covers the checklist, contact details and the full assessment. For help planning care day to day, see dementia care at home.
If CHC is not awarded
Other help still exists. Attendance Allowance is not means-tested and pays £76.70 or £114.60 a week in 2026/27. Someone with severe dementia may be exempt from council tax, and the council may fund part of a home care package after a financial assessment. Our free funding checker shows what might apply, and our guide to council tax discounts for dementia covers that exemption.
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Frequently asked questions
Does dementia qualify for NHS continuing healthcare?
Dementia does not qualify on its own. Someone with dementia qualifies if their overall needs amount to a primary health need, which is judged on the nature, intensity, complexity and unpredictability of their care. Many people in the later stages do meet this test.
Can a care home resident with dementia get CHC?
Yes. If eligible, the NHS pays the full care home fee, including accommodation. A well-run care home managing behaviour skilfully is not a reason to refuse funding.
What is a behaviour diary for CHC?
It is a written log of each episode of distress, aggression, wandering or resistance to care, with the time, the trigger, what carers did and how long it took. Kept for several weeks, it gives assessors evidence that care records often miss.
Can we get CHC if dad lives at home with mum caring for him?
Yes. The setting does not decide eligibility. The assessment looks at what care is needed, including the care a family member currently provides, not only what paid carers do.
Who can help with a dementia CHC case for free?
Beacon offers free initial advice on 0345 548 0300, and Age UK’s advice line and Dementia UK can also help. Be cautious about paid claims firms that take a percentage of any refund.
The Care Panel is an independent publication. We are not a care provider and are not regulated by the Care Quality Commission, because we do not deliver care. Always check a provider’s own CQC registration and inspection report before you commit.
Written and fact-checked by The Care Panel. Last updated September 2026. Sources: NHS England National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care; NHS Continuing Healthcare Decision Support Tool guidance (GOV.UK); Dementia UK guide to continuing healthcare; Beacon CHC; NHS Surrey and Sussex ICB. General information, not financial, legal or medical advice — figures are indicative and subject to change.