Questions about “who can actually make decisions” in dementia care come up often, and they can feel incredibly confusing. Medical staff, social workers, care providers, family, legal systems — each has a role, but none operates in a vacuum.
At the heart of every decision is the person living with dementia. The Mental Capacity Act 2005 begins with a simple principle: adults must be assumed to have capacity unless it is shown otherwise. Capacity is always decision-specific and time-specific, so a person might have the ability to decide what to wear, but not to understand the risks of a complex medical procedure — and they may regain capacity later. When someone has capacity for a particular decision, they remain the decision-maker, even if others disagree.
When the person does not have capacity for a specific decision, the law requires a structured best interests process. This includes considering the person’s wishes, beliefs, and values; speaking with those who know them well; and weighing up what would least restrict their rights and freedoms while still keeping them safe enough. Best interests decisions are not about choosing the easiest option or the safest option — they are about choosing the option that best fits the person as an individual.
Legal authority comes into play when there is a Health and welfare Lasting Power of Attorney (LPA) or a Property and financial affairs LPA. A health and welfare LPA can make decisions about daily care, living arrangements, and medical treatment, but only when the person lacks capacity for that decision. A property and financial affairs LPA can manage finances once registered and may operate either with the person’s permission while they still have capacity or only when capacity is lost, depending on how it was set up. Attorneys must always act in the person’s best interests and in line with the Mental Capacity Act. They do not have unlimited authority and cannot demand actions that professionals consider unsafe or clinically inappropriate.
Where no LPA exists — or where there is serious disagreement — the Court of Protection may step in. The Court can decide where someone should live, appoint a deputy to manage finances or health matters, resolve disputes about best interests, or address concerns about how an attorney or deputy is acting. It functions as a safeguard when consensus cannot be reached or when a person’s rights need additional protection.
Medical professionals also hold important responsibilities. GPs and specialists decide what treatments they are clinically prepared to offer and must assess capacity for the decisions they make. If someone lacks capacity, they must follow the best interests process and involve family wherever appropriate. Nurses, therapists, and community teams contribute to day-to-day decision-making through clinical assessments, rehabilitation plans, and risk management. Any health professional may raise safeguarding concerns if they believe someone is experiencing abuse, neglect, or serious risk.
Social workers and adult social care teams operate under the Care Act 2014, which places duties on local authorities to assess needs, assess carers, determine eligibility for funded support, create care and support plans, and review those plans when circumstances change. They can intervene when a situation is unsafe or unsustainable and lead safeguarding enquiries where necessary. Local authorities decide what services they will fund or commission, and families who self-fund can usually choose different or additional providers as long as care remains safe. In situations of significant risk, safeguarding processes or legal action may limit the available options. Social workers cannot override a valid health and welfare LPA, but they may still act where there is evidence of harm, coercion, or neglect.
Care providers — whether home care agencies or care homes — have a duty of care and must follow regulatory standards set by the Care Quality Commission. They create care plans, carry out risk assessments, and are required to deliver safe, appropriate support. Providers can refuse tasks they consider unsafe or beyond their remit and can ask health or social care teams to review needs. They cannot independently make legal decisions about where a person lives or overrule an LPA or Court of Protection direction, but they can give notice to end a placement or request a reassessment if they cannot safely meet someone’s needs.
Advocacy plays a crucial role when a person’s voice may be lost or overlooked. Independent Mental Capacity Advocates (IMCAs) support people who lack capacity and have no one appropriate to consult when major decisions are being made, such as serious medical treatment or long-term accommodation moves. In some safeguarding situations, IMCAs may also be involved even when the person has family, if this is needed to protect their rights. Under the Care Act, independent advocates can also support people during assessments, care planning and reviews if they would otherwise struggle to take part. Advocates do not make the decision — they ensure the person’s rights and wishes are properly represented.
Families and carers remain central throughout. Even without LPA, they usually hold a deep understanding of the person’s routines, preferences, history, fears and values. Their insight is essential to good decision-making. Families can request care plan reviews, seek GP or consultant reassessment, ask for best interests meetings, raise safeguarding concerns, request a second medical opinion, use formal complaints routes, and access advocacy. They may challenge decisions through the local authority or NHS complaints process if they believe practice has been flawed or the person’s rights have not been upheld. Professionals cannot always do exactly what families want, but families have meaningful influence and a legitimate place at the table.
When situations become difficult, a gentle “ladder” of escalation often helps. Start with open conversation: outline what is happening, how often, and the impact it is having. If concerns persist, request a review — from social care, the care provider, or the GP or consultant. When the person lacks capacity and significant decisions are being considered, ask for a best interests meeting. If issues remain unresolved, follow the formal complaints routes or seek advocacy. In more serious cases, legal advice or Court of Protection involvement may be appropriate.
Useful Resources
Mental Capacity Act (2005)
– MCA Code of Practice (official guidance):
https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
Best Interests Decision-Making
– NHS guide to capacity and best interests:
https://www.nhs.uk/conditions/consent-to-treatment/capacity-and-consent/
Health and Welfare & Property and Financial Affairs LPAs
– Direct guidance on how LPAs work (GOV.UK):
https://www.gov.uk/power-of-attorney/overview
– Using a health and welfare LPA (decision-making rules):
https://www.gov.uk/make-decisions-for-someone/health
Court of Protection
– What the Court can decide and when it becomes involved:
https://www.gov.uk/court-of-protection
Care Act 2014 Duties
– Eligibility, assessments and care planning explained:
https://www.gov.uk/guidance/care-and-support-statutory-guidance
Carer’s Assessment
– Direct page describing the right to a Carer’s Assessment:
https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/
Independent Advocacy
– IMCA duties and when an IMCA must be appointed:
https://www.gov.uk/government/publications/independent-mental-capacity-advocacy-services
Raising Safeguarding Concerns
– Understanding adult safeguarding under the Care Act:
https://www.local.gov.uk/our-support/our-improvement-offer/care-and-health-improvement/safeguarding-resources
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