This guide will help you answer 2.2. Explain the importance of advocating for an individual with dementia who may be prescribed medication.
People with dementia can find it hard to communicate their wishes or understand what is happening to them. When it comes to medication, this can make them more vulnerable. Advocacy means standing up for someone’s rights, wishes, and best interests, especially when they may struggle to express these themselves. In this guide, we will look at why this is so significant for people with dementia who may be prescribed medication.
Dementia and Capacity
Dementia is a group of conditions that cause problems with memory, thinking, or behaviour. This affects how people make decisions or understand information, including what prescribed medication is for and any possible side effects.
Mental capacity means the ability to make decisions for oneself. The Mental Capacity Act 2005 protects those who cannot fully make decisions for themselves. The Act (which applies in England and Wales) starts from the assumption that a person can make their own decisions and says they must get all practicable help to do so. A decision made for someone who lacks capacity for that decision must be made in their best interests. See section 1 of the Mental Capacity Act 2005. Advocates play a key role in this process.
Risks Linked to Medication in Dementia Care
People with dementia are at higher risk of medication errors. Such risks include:
- Being prescribed medication that is not needed
- Not understanding why medication is given
- Taking the wrong dose, missing doses, or overdosing
- Experiencing side effects without being able to report them
- Drug interactions if more than one medication is taken
- Stopping medication too soon or continuing when it is not beneficial
Medication can help, but it must only be used when it is the best choice. Any decision about starting, changing or stopping a medicine is for the prescriber, who also explains the risks and benefits. Advocating for the person helps prevent unnecessary or inappropriate medication use.
What Does Advocacy Mean in This Context?
Advocacy means:
- Supporting the person to be heard
- Making sure decisions put the person’s wishes and interests first
- Questioning prescribing decisions if they do not appear in the person’s interest
- Raising any worries the person or their family have
- Helping carers and professionals really listen to the individual
- Promoting the person’s dignity and autonomy
If someone cannot say what they want, the advocate will help find out what matters to them. This protects their rights and wellbeing.
Benefits of Advocacy for People with Dementia
Promotes Person-Centred Care
Person-centred care is about treating everyone as an individual. Advocacy follows this value. It focuses on:
- Respecting the person’s values and preferences
- Looking at personal history, culture, and beliefs
- Seeking ways for the person to participate in decision-making
Medication should match the individual’s needs rather than being used to make care easier for staff.
Protects Rights
Being prescribed medication can affect basic rights, such as consent and freedom of choice. In England and Wales, the Mental Capacity Act 2005 says a person must be assumed able to make their own decisions unless shown otherwise, and must be supported to do so (see section 1). The Human Rights Act 1998 protects rights such as respect for private life.
Advocates help make sure the person’s views, wishes and rights are heard and taken into account. They help prevent people being given medication without proper consent or understanding.
Reduces Risk of Abuse and Neglect
Overmedication, sometimes called chemical restraint, happens when medicines are used to control behaviour rather than to meet a person’s health needs. This is unsafe and may be abuse or neglect. If you are worried, raise it straight away through your organisation’s safeguarding procedure, and call 999 if someone is in immediate danger. See the Care and support statutory guidance, chapter 14.
By asking questions and making sure medication is prescribed safely, advocates help prevent neglect or abuse. They alert others if there are risks or mistakes.
Supports Family and Friends
Dementia can be distressing for loved ones, especially when making decisions about treatment. Advocates can:
- Explain things clearly to families
- Bridge gaps in understanding between families and professionals
- Help families speak up if they have concerns
- Manage disagreements calmly
- Make sure the person’s voice remains central
Strong advocacy can help families feel less isolated and overwhelmed.
Promotes Safer Care
Safe practice means checking that:
- The correct medication has been prescribed
- Side effects are identified and dealt with
- Any concern about a medicine is raised with the prescriber, who decides whether it is changed or stopped
- All decisions are reviewed regularly
Advocates help make sure these checks happen. They support safer care, lower the risk of harm, and improve health outcomes.
How Workers Can Advocate for a Person with Dementia
Building Trust and Respect
Forming a trusting relationship is the foundation of good advocacy. Workers should:
- Use clear language (avoid jargon)
- Take time to listen
- Notice non-verbal communication
- Look out for signs of distress or changes in mood
If the person cannot communicate through words, watching facial expressions, body language, or moods helps workers know what is right for them.
Supporting Understanding and Informed Decision-Making
Providing information in simple, everyday language can reduce confusion. Use of pictures, signs, or objects may help. Workers can show packaging and describe what the medication is for.
Allowing extra time and repeating information if needed also helps. The aim is to enable the person to take part in choices about their care as much as possible.
Challenging Unsafe or Unnecessary Prescribing
If a worker feels that medication has been prescribed inappropriately, or that the person is struggling with side effects, they should raise these concerns. This includes:
- Asking for medication reviews
- Noticing any changes in health or mood after new medication
- Recording concerns
- Speaking with doctors or the care manager about safer alternatives
- Checking the medication policy of the workplace
Non-drug approaches, such as meaningful activities or changes to the environment, can be raised alongside a medication review. Any change to a medicine is a decision for the prescriber. See NHS information on dementia.
Encouraging Regular Reviews
Dementia is a progressive condition, and needs can change over time. Medication that was helpful in the early stages may become less effective or even harmful later on.
Workers should raise concerns and ask the care team or GP for a medication review when needed, following the person’s care plan and their organisation’s medication policy. See CQC Regulation 12 (England).
Respecting Consent and Choice
By law, adults have the right to refuse medical treatment, even if this might cause them harm, providing they have capacity to decide. If the person lacks capacity to consent to a particular decision, a decision made for them must follow the best interests process under the Mental Capacity Act 2005. This might involve family, friends, and other professionals.
Recording and Reporting
Documentation is an important part of advocacy. Workers should:
- Record any concerns or changes
- Note discussions about medication
- Report side effects or suspected errors promptly
- Follow up to see what action has been taken
Clear records make it easier to track what has happened and protect everyone involved.
Examples of Advocacy in Action
Case Example 1: Reviewing Sedatives
Mary lives in a care home and has advanced dementia. She is given sedatives to reduce agitation, but she becomes sleepier and falls more often. A worker notices this and discusses concerns with the nurse and GP. After a medication review, the sedative dose is reduced, and Mary’s quality of life improves.
Case Example 2: Questioning Antipsychotics
Tom becomes confused and frightened, sometimes shouting at staff. An antipsychotic is suggested. A worker asks if other methods, like talking therapy or distraction, could help first. Together with Tom’s daughter, they ask the GP to try non-drug approaches. The behaviour settles, and Tom avoids potential side effects.
Case Example 3: Helping with Communication
Susan does not speak clearly but frowns and turns away when offered tablets. The worker uses body language and her care plan to find out if she is in pain or feeling unwell. The doctor is informed. After reviewing her medications, it turns out one drug is making her nauseous. Stopping this improves her mood and willingness to take other medicine.
Legal and Ethical Duties
Workers have a duty of care. This means acting always in the best interest of the person with dementia. Several laws set out the duty to advocate.
Mental Capacity Act 2005
- Requires that people must be assumed to have capacity unless shown otherwise
- Supports people to make their own decisions if possible
- Requires decisions made on behalf of someone to follow best interest principles
- An Independent Mental Capacity Advocate (IMCA) must be instructed in certain situations, such as serious medical treatment, where a person lacks capacity and there is no one appropriate to consult other than paid staff. See section 37 of the Mental Capacity Act 2005.
Human Rights Act 1998
- Protects rights including the right to life, freedom from inhuman or degrading treatment, and respect for private and family life. See the Human Rights Act 1998.
- Advocacy ensures rights are not ignored or breached during treatment
Health and Social Care Act 2008 (Regulated Activities)
- Organisations must focus on consent, dignity, and involvement
- Medicines must be used and reviewed safely
Overcoming Barriers to Advocacy
Organisational Issues
Some workplaces may lack a culture of advocacy or discourage staff from speaking up. Workers may need support from colleagues or managers when raising issues.
Time and Resources
Advocacy requires time, patience, and sometimes creativity to communicate well with a person with dementia.
Teams should encourage workers to spend enough time getting to know the person. Good staffing levels and ongoing training can support this.
Communication Difficulties
People with dementia can struggle with speech, memory, and understanding. Workers can overcome these barriers by:
- Using simple words and sentences
- Breaking information into chunks
- Using touch (if appropriate) or visual cues
- Working with speech and language therapists when needed
Working with Families and Carers
Family members know the person’s history, likes, and dislikes, and may notice early signs of trouble. Workers should:
- Welcome family involvement
- Share updates, with the person’s permission
- Listen to worries and suggestions
This teamwork benefits the person with dementia.
Values and Skills for Effective Advocacy
Successful advocacy relies on:
- Compassion and empathy
- Listening skills
- Assertiveness: calmly challenging unsafe or unfair practice
- Integrity: always doing what is right for the person
- Knowledge of laws and good practice
- Clear, honest communication
Regular supervision and reflective practice can help workers develop these skills.
Final Thoughts
Advocating for someone with dementia who may be prescribed medication is central to safe, person-centred care. It prevents harm, protects rights, and helps the person live as well as possible. Workers who act as advocates build trust, question unsafe practice, support informed choices, and uphold dignity at all times.
Their actions make a difference. Advocacy means looking out for the person when they need it most—when their own voice is hardest to hear.