Dementia, Eating and Weight Loss

Why eating changes in dementia

• Memory and attention: forgetting meals, not realising they are hungry, being distracted at the table.
• Recognition and coordination: not recognising food or utensils, forgetting how to use them, difficulty with cutting or scooping; see eating with tremor or weak grip.
• Sight problems: poor contrast between food, plate and table; cataracts; see low vision home safety.
• Changes in taste and smell, with a preference for sweet foods.
• Swallowing difficulty, which can lead to coughing, choking and fear of eating; see swallowing problems and dysphagia.
• Dental problems: painful teeth, ill-fitting dentures, mouth sores; see dental health and eating and oral care for frail older adults.
• Physical illness: infections, constipation, pain, breathlessness, nausea; see constipation in older adults.
• Low mood or anxiety: poor appetite; see depression in older adults.
• Medicines: nausea, dry mouth, drowsiness, loss of appetite; see medicine side effects families should watch.
• Environment: noise, bustle, television, unfamiliar carers, rushing.
• Restlessness and pacing, which burn energy and prevent sitting at a table.
• Advanced dementia: loss of interest in food and ability to swallow is part of the late stage; see dementia stages and what each needs.

First steps: look for treatable causes

• Weigh your parent monthly (or weekly if concerned) on the same scale, at the same time, and keep a record; see weighing scale and weight loss in seniors. Unplanned loss of 5 per cent or more in a month, or 10 per cent in six months, deserves a doctor's review.
• Ask the doctor to check for infection, thyroid problems, anaemia, diabetes, constipation, pain, depression, dental or swallowing problems and medicine effects; see anaemia and fatigue in older adults.
• Arrange a dental check; see oral health and general health in seniors.
• Check eyesight and hearing; see hearing and vision checkup schedule.
• Ask for a swallowing assessment if coughing, a wet voice or chest infections occur.
• Look at the day: is the person hungry at a certain time? Is there enough activity to stimulate appetite? See dementia daily routines.

Making mealtimes easier

The setting - A calm, quiet, unhurried place, with the television off and few people. Sit with the person and eat together if you can; people often copy. - Same time, same place, same chair each day. - Good light and a clear, uncluttered table. - A comfortable, upright position, with feet supported and a firm cushion if needed; see seat cushion buying guide. - Pleasant smells: the aroma of familiar cooking can stimulate appetite. - Privacy and dignity: avoid bibs that look childlike; use a napkin or apron respectfully.

The plate and cutlery - Contrasting plate (for example a plain, brightly coloured plate under pale food) helps those with vision problems; avoid patterned plates, which may look like food. - One food at a time, or a simple plate; too much choice confuses. - Small portions, refilled, are less daunting than a heaped plate. - Easy-grip cutlery, a plate guard or a non-slip mat; see easy grip cutlery guide. - A cup with handles and a lid, or a straw. - Finger foods when cutlery becomes hard (see below).

Your approach - Show as well as tell: place a spoon in the hand, or gently guide the hand, then let go. - Use simple, kind prompts: "Try some dal." Avoid "Eat!" - Give time; do not rush or hover. - Offer choices of two, rather than open questions. - Eat with them and model. - Hand over-under assistance when needed, with respect: stay at eye level, offer small mouthfuls, wait until swallowed before the next. - Do not force, argue or pinch the nose. If the person refuses, stop, wait and try again in 15 to 30 minutes. - Praise and thank. - Keep to the person's own habits: eating with hands, taking food from a thali or banana leaf, eating on the floor or at a table, sitting with family; see caring with religion and culture in mind.

Food ideas for Indian diets

• Little and often: five or six small meals and snacks through the day beat three big meals.
• Favourite foods first: include familiar dishes and tastes from earlier life, even if less healthy; enjoyment matters.
• Boost calories and protein without more volume: add ghee, butter, oil or cream to rice, dal, khichdi or roti in moderation as the doctor or dietician advises; add milk powder to milk, porridge, kheer or upma; add paneer, egg, curd, ground nuts or sesame to dishes. See how much protein do seniors need and indian meals for high-protein seniors.
• Sweet tastes are often preferred: milk-based sweets, fruit, banana, kheer, custard, halwa, laddoo (in moderation, especially if diabetic).
• Finger foods when cutlery is hard: small parathas or rotis with filling, idli pieces, cutlets, tikkis, boiled egg wedges, paneer cubes, soft fruit slices, sandwiches, dhokla, upma balls, sticks of cooked vegetables, cheese cubes, makhana, cooked sweet potato.
• Soft, moist foods if chewing is hard; see soft and pureed diets.
• Cold and warm: some prefer cooler foods; test for temperature, since a person may not feel heat.
• Fluids: soups, buttermilk, lassi, milkshakes, coconut water, fruit juice, kheer and dal soups add calories and fluid.
• Colourful and aromatic food attracts attention.
• Keep snacks visible: a bowl of fruit, nuts or biscuits within sight; many people with dementia eat what they see.
• Honour food customs and fasting, with care for health; see fasting, festivals and older adults.
• Avoid foods that are hard to chew, very dry or sticky, or choking risks, if swallowing is a problem, as advised.

Fluids and dehydration

People with dementia often drink too little, and dehydration worsens confusion, constipation and infections. Offer a drink at every contact; keep a cup visible; try a variety of fluids; offer water-rich foods; use a lidded cup or straw; avoid too much tea and coffee. Check urine colour. See hydration for older adults and diarrhoea and dehydration in seniors. If your parent has heart or kidney disease and fluids are restricted, follow the doctor's advice.

Swallowing safety

If there is coughing, choking, a wet or gurgly voice, food stuck in the mouth, drooling or repeated chest infections, ask for a swallowing assessment. A speech and language therapist may advise on food textures (soft, minced, pureed), thickened drinks and positioning. Follow it exactly. Sit upright to eat and stay upright 30 minutes after; offer small spoonfuls; check the mouth is clear. Do not give food to a drowsy person. Good mouth care reduces the risk of pneumonia; see aspiration pneumonia prevention. Call 112 for choking that does not clear.

Supplements and fortified foods

If the person cannot eat enough, a doctor or dietician may suggest fortified foods or oral nutritional supplement drinks, and sometimes vitamins. Protein or energy supplements are not substitutes for meals; they are best used between meals so as not to reduce appetite. Ask for advice, particularly with diabetes or kidney disease; see protein powder for older adults, nutrition for diabetes after 60 and nutrition for kidney disease. Do not use herbal "appetite" products without the doctor's advice; see supplements and medicine interactions.

Special situations

• Pacing and restlessness: offer snacks on the move, "eat and walk" finger foods, and short seated breaks.
• Hoarding or hiding food, or eating non-food items: supervise, remove hazards, tell the doctor.
• Overeating or craving sweets (can occur in some dementias): offer healthier options, limit access without conflict, and tell the doctor.
• Mealtime at a care centre or day centre: share the person's preferences and needs with staff.
• Attendants: brief them with a written plan; see hiring a home attendant checklist.
• Alone at mealtimes: arrange company or meal services, and check that meals are eaten.
• Weight gain from eating too much and moving too little is less common but needs advice.

Advanced dementia and feeding decisions

In late dementia, appetite and swallowing often decline. Eating less is part of the illness, and careful hand-feeding, with attention to comfort, is the usual approach. Feeding tubes are often discussed by families, but research shows that in advanced dementia, tube feeding does not usually prolong life, prevent pneumonia or improve comfort, and it carries risks. Careful hand feeding, with the person's preferences and comfort in mind, is generally preferred by experts. Such decisions should be made with the doctor and family, in the person's best interests, and ideally planned early; see advance care planning in India, tube feeding and supplements basics and palliative care at home guide.

Looking after the carer

Mealtimes can be exhausting and emotionally heavy: refusal feels like rejection. Remember that the person is not being difficult deliberately. Share mealtimes among family; take breaks; accept that some days are poor; see caregiver burnout signs and prevention.

When to ask a professional

Ask a doctor for weight loss, poor intake, swallowing trouble, dehydration or new refusal to eat. A dietician can design a fortified diet. A speech and language therapist assesses swallowing. A dentist checks teeth and dentures. An occupational therapist can advise on adaptive cutlery and positioning. For senior services, call Elderline 14567. In an emergency, such as choking, call 112.