Dementia and Medicines: Managing Safely

The basic rules

1. One person in charge. Choose a main carer to manage medicines, with a backup, so that doses are not missed or doubled. 2. A single, current written list. Include name as on the packet, what it is for, dose, times, how to take it (with food, etc.), who prescribed it and the date started. Update at every change; carry a copy to every appointment; see emergency contact card and medical summary and keeping a health record at home. 3. Store safely. Keep medicines in a locked or high place, away from the person; people with dementia may take wrong tablets or too many; see dementia home setup. 4. Give, do not leave. Do not leave tablets for the person to take later; watch them swallow. 5. Never stop, skip, crush, change or add medicines on your own. Always ask the doctor or pharmacist. Some tablets must not be crushed. 6. Do not share or reuse medicines. 7. Check expiry dates and discard old medicines safely. 8. Tell every doctor and dentist the full list, including herbal, ayurvedic and over-the-counter products; see supplements and medicine interactions.

Organising medicines

• Use a weekly pill organiser with compartments for morning, noon, evening and night; fill it once a week, at a fixed time, and check against the list; see pill organiser guide and setting up a weekly medicine box.
• Ask the pharmacist for blister packs or labelled dosing sets if available.
• Set alarms on your phone for every dose time; see medicine reminders for forgetful parents.
• Link doses to routines: with breakfast, after prayers, before bed.
• Keep a tick chart or log for each dose given; this prevents doubling and shows missed doses; see care diary and handover notes.
• Reduce the number of times per day, where the doctor can simplify the schedule.
• Plan refills a week ahead, and have a spare supply for travel and festivals.
• Share the plan with all carers and paid attendants, with a written handover; see hiring a home attendant checklist.
• Keep special medicines separate and clear, such as blood thinners, insulin, inhalers and eye drops; see eye drops made easy.

Giving medicines with respect

• Choose a good moment, when the person is calm, and at the same time each day.
• Explain simply: "This is for your heart." Avoid long explanations or lies.
• Offer water or a favourite drink; sit them upright, and stay until swallowed.
• Break tasks into steps, give one tablet at a time if needed.
• Praise and thank.
• Keep a calm manner; if rushed or tense, the person may refuse.
• Never hide medicines in food or drink without the doctor's and pharmacist's advice. Covert medication raises ethical and legal issues, affects the effect of some drugs and may be unsafe; it should only be considered through a proper decision process involving the doctor, in the person's best interests. See dignity and consent in care.

When the person refuses

Refusal is common. Look for reasons:

• Fear or suspicion: "poison"; reassure; let a trusted person give it.
• Swallowing difficulty: pain, dry mouth, large tablets; see below.
• Taste or side effects: nausea, bitterness, dizziness.
• Not understanding: simple language, show the tablet.
• Mood: low mood or agitation; see depression in older adults.
• Pill burden: too many.
• Timing: wrong time of day.
• Being rushed or tense.

Try again after a few minutes; change who gives it; offer a drink first; use praise. If refusal continues, tell the doctor the same day, especially for essential medicines such as those for blood pressure, diabetes, epilepsy, Parkinson's disease or heart conditions. The doctor may change the form (for example, liquids or patches), simplify, or consider other options. Do not force.

Swallowing difficulty

Swallowing problems are common in dementia, and tablets can stick or cause choking. Signs: coughing during meals or when taking medicines, holding tablets in the mouth, a wet voice. Tell the doctor or a speech and language therapist. Ask whether liquid or dispersible forms exist; do not crush or open tablets or capsules unless the pharmacist confirms it is safe, because some release slowly or irritate. Sit upright, take tablets one at a time with water, and check the mouth afterwards. See swallowing problems and dysphagia and aspiration pneumonia prevention.

Medicines used for dementia

Some medicines may be prescribed to slow worsening or ease symptoms of certain types of dementia. They help some people modestly, and have side effects such as stomach upset, slow heart rate, dizziness or sleep disturbance. They need regular review. Never start or stop them without the doctor, and report any new symptoms. Never give anyone else's medicines.

Sedatives, sleeping tablets and antipsychotics: special caution

Medicines that calm or sedate are sometimes used in dementia when distress is severe or there is risk, but they carry serious risks in older people: more confusion, falls and fractures, drowsiness, pneumonia, stroke and, for some, a higher risk of death. Guidelines say that they should be used only after non-drug approaches have been tried, at the lowest effective dose, for the shortest time, with regular review. Families should:

• Ask the doctor why a sedating medicine is recommended, what the alternatives are, what the risks are and when it will be reviewed.
• Try non-drug approaches first: routine, pain relief, light, activity, calm; see dementia daily routines, dementia sundowning and dementia challenging behaviours.
• Never give sleeping tablets or sedatives bought or left over without the doctor's advice.
• Never stop a long-term sedative suddenly; ask the doctor how to review and reduce safely.
• Report drowsiness, stiffness, falls, swallowing problems or unusual movements.

Other medicines that can worsen dementia

Several common medicines can cause confusion in older people, especially in dementia: some bladder medicines, certain antihistamines (including in cold and allergy remedies), some sleeping and anxiety tablets, strong painkillers, some stomach and nausea medicines and others. Ask the doctor or pharmacist to review the list for medicines with these effects, and before buying anything over the counter. See polypharmacy and deprescribing and painkillers and older adults.

Recognising side effects and illness

Be alert for new or worsening: confusion, drowsiness, agitation, dizziness, falls, poor appetite, nausea, vomiting, constipation or diarrhoea, rash, swelling, breathlessness, slow or fast heartbeat, unusual bruising or bleeding, tremor or stiffness. Note when it started in relation to medicine changes. Tell the doctor. Sudden confusion may be delirium from infection or dehydration; see delirium in older adults. See medicine side effects families should watch.

Special medicines needing extra care

• Blood thinners: consistent timing; bleeding and bruising watch; avoid new painkillers without advice; see atrial fibrillation and blood thinners.
• Insulin and diabetes tablets: low sugar risk with poor eating; carers should supervise and know the plan; see diabetes and low-sugar emergencies.
• Heart and blood pressure medicines: watch for dizziness and low blood pressure; see hypertension home care guide and how to measure blood pressure at home.
• Parkinson's medicines: timing is critical; see Parkinson's disease at home.
• Eye drops, patches and inhalers: carers should give them.

Regular review with the doctor

Ask for a medicines review at least once or twice a year and after any hospital stay. Questions to ask: Is each medicine still needed? Is the dose right now? Can the number be reduced? Are there interactions? Is any contributing to confusion or falls? What are the side effects to watch? When should we review again? Bring all medicines, including supplements, to the visit; see preparing for a doctor's visit with a parent. A pharmacist can help with an overview. Use one pharmacy, if possible.

Hospital stays and travel

Take the medicine list and supplies to hospital; ask staff to continue exactly; monitor for missed doses; see emergency bag for a hospital visit and hospital admission and discharge for seniors. When travelling, carry supplies in hand luggage; see travel with an elderly parent checklist.

Overdose and emergencies

If a double dose or wrong tablet is taken, or tablets are found missing, call the doctor, a poison helpline or 112 for drowsiness, breathing difficulty, collapse or if unsure. Keep the packets to show.

Carer wellbeing

Managing medicines is a daily responsibility that causes worry. Share tasks, use checklists, and ask for help; see caring for a parent with dementia at home and caregiver burnout signs and prevention.

When to ask a professional

The doctor prescribes and reviews medicines. A pharmacist can check interactions, suggest organisers and answer questions. A memory clinic or geriatrician can optimise medicines in dementia. A speech therapist can advise on swallowing. For senior services, call Elderline 14567. In an emergency, call 112.