Why the diagnosis is not the question
The framework states that eligibility is not determined by diagnosis, by the setting in which care is delivered, or by who is providing or funding it. It turns on the nature, intensity, complexity and unpredictability of the person's needs, considered as a whole. Source: Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.
Two people with the same diagnosis can therefore need very different care, and the process is built to look at the care rather than the label. That is why a letter saying advanced dementia carries less weight than a page describing what happened last Tuesday night.
Where dementia care usually shows up
The assessment covers 12 care domains. These are the ones where families caring for someone with dementia most often have information nobody else holds. It is not a shortlist and it is not a scoring hint, the whole picture is considered. Source: Department of Health and Social Care, NHS continuing healthcare decision support tool guidance, last updated 27 October 2022.
- Cognition. Memory, understanding, awareness of risk and decision making.
- Behaviour. Behaviour that carries risk to them or to others, and how it is managed.
- Psychological and emotional needs. Mood, distress, anxiety and motivation, and the support these take.
- Communication. Expressing needs and understanding others, and the help this takes.
- Nutrition: food and drink. Eating and drinking, and any help, equipment or feeding regime needed.
- Continence. Bladder and bowel needs, and the help these take.
All twelve, with the questions we ask about each, are on the care domains page.
Nights, and what gets left out
The single most under recorded part of dementia care is the night. An assessment held at eleven in the morning, with a visitor in the room, sees the best version of the day and none of the night at all.
- How many times someone gets up, on an ordinary night, and for how long.
- Whether the person is oriented on waking, and what has to be done if not.
- How often the door, the cooker, the stairs or leaving the house has been an issue, and when it last happened.
- How long distress lasts, what helps, and what does not.
- How many people it takes when it is at its worst.
Write those down with dates. Specific and dated beats strongly worded, every time.
What to do next
Start with the free typical day record sheet, which needs no email address and doubles as preparation. If you want that written up properly across all 12 domains, with the letter that matches your stage, that is the CHC Family Evidence Pack. Free help with the process itself is available from Age UK, Carers UK, Alzheimer's Society and Citizens Advice.
Eligibility for NHS Continuing Healthcare is decided by the integrated care board, informed by a multidisciplinary team assessment. We are not part of that assessment and cannot attend it, and nothing here predicts or implies a decision.
Questions families ask
Does a dementia diagnosis qualify someone for NHS Continuing Healthcare?
No. The National Framework states that eligibility is not determined by diagnosis, by setting, or by who provides the care. It is decided on the nature, intensity, complexity and unpredictability of the person's needs. Source: Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.
Which parts of the assessment matter most in dementia?
There is no fixed answer, because the assessment looks at the whole picture across 12 domains. In practice, families describing dementia care most often have detail to add on cognition, behaviour, psychological and emotional needs, communication, nutrition, continence and medication.
The care is unpredictable. Does that count?
Unpredictability is one of the four characteristics the framework names, alongside nature, intensity and complexity. Describing what varies, how often, and what happens on the bad days is directly relevant information. Source: National Framework, last updated 27 October 2022.
Sources
- Department of Health and Social Care, National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, last updated 27 October 2022.
- Department of Health and Social Care, NHS continuing healthcare decision support tool guidance, last updated 27 October 2022.
- NHS website, NHS continuing healthcare, nhs.uk/conditions/social-care-and-support-guide.