The phone call
The manager rings: your mother has refused personal care for days, spits out her tablets, pushes her plate away. You are asked what should be done — and the implication is that this is now your decision.
That is where most families take a wrong turn. Start with what the law says.
Refusing is a right, not a symptom
The Mental Capacity Act starts from a presumption: an adult is assumed to have capacity unless it is established otherwise, and a person is not to be treated as unable to decide merely because the decision is unwise. Capacity is decision-specific: your mother may be unable to manage her finances and perfectly able to decide she does not want a shower this morning.
Where she does have capacity, her refusal ends the matter — for washing, for tablets, for a hospital appointment. Living in a care home does not remove that.
Where she lacks capacity for that specific decision, the framework is best interests: her past and present wishes, her beliefs and values, and the views of anyone engaged in caring for her must be taken into account, and the least restrictive option must be chosen. That is a structured process, not a nurse's judgement call at 7am.
The point about hidden medication
Giving medicine disguised in food or drink — covert administration — is not a practical workaround. It is lawful only where the person lacks capacity for that decision, where it has been assessed as being in their best interests, and where it has been agreed in advance in a documented multidisciplinary process involving the prescriber, the pharmacist and the care team. It is never a decision taken quietly on a shift.
So if you are told "we just put it in her yoghurt", ask: "Where is the covert administration care plan, who was involved in the best-interests decision, and when is it reviewed?" If there is no answer, there is no plan.
Before the law: the three causes to rule out
In the great majority of cases, refusal is not a decision — it is a message. Ask for these to be excluded, in this order:
- Pain. Someone who hurts when moved resists being washed, and with dementia this is not said in words. Ask whether pain has been assessed with an observational tool, and when.
- Delirium. Refusal that appeared over days rather than weeks, with fluctuating confusion, is delirium until proven otherwise: urinary infection, dehydration, constipation, a new medicine.
- The situation itself. Unfamiliar hands, cold water, a man washing a woman who has never experienced that, the rush at seven in the morning. Anyone resists that; it only gets called "refusal" at 88.
For tablets there is a fourth cause nobody checks: swallowing difficulty. Someone who chokes spits tablets out. That is a speech and language therapy referral and a question about the formulation, not a persuasion problem.
What to ask for
- A structured medication review. Which of these tablets still make sense? Statins, bone protection and supplements can often be stopped — and half the refusal problem goes with them.
- Different formulations: liquids, orodispersible tablets, patches.
- Personal care done differently: a different time of day, the same carer each time, same-sex care, washing in stages instead of a full shower, telling her before touching her.
- All of it written into the care plan: what was tried, what worked, and how often the refusal actually happens. "She always refuses" is usually a memory, not a record.
What not to accept
An antipsychotic "so we can wash her". Medication given to overcome resistance is chemical restraint. Inappropriate antipsychotic prescribing in dementia has been a national concern for years because of the raised risk of falls, stroke and death. Ask for the documented reason and the review date.
Two staff holding her as routine. A single emergency is one thing; a daily practice that appears in no record is another — and depending on how it is done, it engages both restraint and deprivation of liberty questions.
"She has dementia, so she can't decide." That is precisely the assumption the Act prohibits.
When it becomes serious
If the refusal extends to food and fluids and persists, this stops being a behaviour problem and becomes a clinical and ethical one. Ask for a GP review and a conversation about the goal of treatment, and bring any advance decision to refuse treatment — a valid and applicable advance decision is legally binding. Check whether anyone holds a lasting power of attorney for health and welfare, because that is the only document that lets someone else consent or refuse on her behalf.
In advanced dementia, tube feeding generally neither extends life nor improves it. "What are we trying to achieve with this?" is a question you may ask, and answer no to.
If nothing changes
- A written request for a care plan review with the GP and the manager, with a date.
- Access to the records: what was tried, how often, with what result.
- The home's complaints procedure, then the Local Government and Social Care Ombudsman.
- The local authority safeguarding team if medication is being given covertly with no plan, or if restraint is routine — and CQC, for whom consent and person-centred care are fundamental standards.
And if the problem is the home
Someone who resists needs time, continuity and the same hands each morning. A home with high turnover and a thin early shift cannot provide those — and then calls it refusal.
If you reach that conclusion and do not have another round of calls in you, that is the part we do. Tell us the area, your parent's needs and what is not working, and you get a shortlist of homes worth calling, for £69. If you don't receive at least 3 homes matching the area and criteria you gave us, we refund you in full. Start here
This article is general information for families, not legal or medical advice. Capacity assessments and treatment decisions belong to the professionals involved, and mental capacity law differs across England, Wales, Scotland and Northern Ireland. Curalune does not allocate beds and does not guarantee availability.
