In this article, Dr Barbara Sharp, Chair, Vegetarian for Life, Registered Nurse, Nurse Teacher, Trainer, Research & Policy, Consultant, and Non Executive Director, explores the link between dementia and nutrition, and offers advice for informal carers when it comes to dementia and nutritional care.
Dr Barbara, who specialises in Dementia, Gerontology, Vegetarianism, Veganism, previously worked with Alzheimer Scotland, supporting people with dementia and their families for 30 years.
What is dementia?
Dementia is a broad term applied to at least a hundred different conditions which affect the brain. Although each condition has different effects, they have core aspects in common in that they damage brain cells (neurones) and their connections. These conditions are mostly progressive in nature, but the rate of progression varies. A complex array of features (or symptoms) result, which change over time. A key message is that dementia is a uniquely individual experience and it’s important that assumptions are avoided because of a person’s diagnosis. The focus of practical support needs to be on the person and how they are experiencing daily life.
Dementia and nutritional care
Many factors will be important beyond the changes in the brain – such as personality, relationships, life experience, general state of health, stressors, coping mechanisms, the social and physical environment the person finds themselves in. All of these can be enabling factors or challenging to the person’s ability to function and cope well with eating and drinking. An important aspect of dementia is that changes are to be expected and flexibility is required.
When a person has a diagnosis of dementia a common issue is that as problems arise it is assumed these are just part of the condition and little can be done. It is good to remain open minded – problems may or not be associated directly with having dementia – but there are usually ideas that can be tried to make the situation better.
Do people with dementia experience changes in their eating habits?
Issues around eating, drinking and nutrition occur frequently in dementia and for different reasons. Some relate to the progressive changes in the brain, but most involve a combination of factors as outlined above. It is commonly understood that many people experience memory loss in dementia. Memory is a complex brain function and disruption is a key feature in the most common form of dementia which is Alzheimer’s disease. However, it would be over-simplifying what people with dementia experience to simply say ‘people forget how to do things’. Of course, a person with dementia can also experience other conditions too, especially common in older age. Dementia may mean difficulties arise in managing even long-term conditions such as diabetes and this needs to be monitored whilst avoiding taking away control unnecessarily. In the following sections I hope to explain a little about how different factors pose problems and suggest some things to try to alleviate situations, and who you might turn to for further help.
How can you support a person with dementia who lives at home to eat well?
If the person is still at home, shopping for food and cooking for themselves, some skills in these basic activities can fluctuate or be lost. In early dementia, lists, diaries calendars, and other prompts can be helpful. Many shops engage now in staff training to understand the needs of customers with dementia and some supermarkets have a ‘relaxed checkout lane’. Local grocers who know the person well can be extremely helpful when they understand what is happening.
Technology and design is developing fast and contributing significantly to supporting people with dementia to remain more independent at home for longer. The Alzheimer’s Society online shop has a wide range of products to help people living with dementia, including a dedicated eating and drinking section. For example, lightweight, durable crockery that’s brightly coloured and designed to support people experiencing problems with dexterity, vision and perception. You can also see just how product design is creating a more enabling café environment for people with dementia in the Alzheimer Scotland Resource Centres and you’ll see many ideas there which can be translated to the home environment. (insert embed of video here https://www.youtube.com/watch?v=nzGXxmG4b9I) It is worthwhile exploring what is available through your own local professional support networks.
Stress affects memory and other functions adversely so creating as calm an atmosphere as possible is helpful.(1 ref) For some people with dementia the noise and bustle of shopping and indeed any large gathering may be just too much. Shopping for them, and helping them prepare meals they enjoy can help here. As can creating a calm atmosphere in the home at meal times.
Lowered mood or any source of pain can reduce appetite and as communication is also affected, the person may not be able to tell you how they are feeling. Problems may be communicated through changes in behaviour when words are not available to the person to express how they feel. Any sudden change in the person, especially if they are not drinking and seem more confused could be an indication of an underlying illness beyond their dementia and medical advice should be sought.
Healthy eating is always important, even more so as we age, however, as dementia progresses, food and drinks previously enjoyed by the person may no longer be accepted or enjoyed as before; and other items eagerly consumed that were disliked in the past. The majority (not all) of people with dementia are older and tastes tend to change as we age towards a greater liking for sweet and salty foods. It is worth thinking about this when trying different things to tempt the person to eat. You may need to experiment with adding herbs, spices and other flavourings to adjust to changing tastes.
The other senses are important too. The smell of food has a close association with stimulating appetite and enjoyment of food. It also acts as a cue that food and eating will follow – helpful as sequencing is often a problem for people with dementia. Making other connections can be helpful, for example, using words, gestures, and showing the person the food or drink you are referring to can aid their understanding.
Make sure they can see their food
Many visual changes and conditions are associated with ageing generally and dementia specifically. One of the most significant of these to eating and drinking is a reduction in visual contrast sensitivity. The result is that unless there is good colour contrast between, for example, plate and food, tablecloth and plate, tumbler and drink, items may be difficult for the person to see. Obvious examples are white potatoes or rice on a white plate, or clear water in a clear glass. Choosing strong colour contrasts can be very helpful and aid independence. Good lighting (but avoiding glare) is also important in helping the person to see their food.
Keep things within reach
Utensils and table coverings with complex patterns may pose problems as visual changes mean these could be uncomfortable to look at and patterns may even appear to be moving, so best to choose plain colours. Warm colours such as red, yellow and orange can be easier to see. It is also helpful to avoid having too many things on the table – keep to the basics required and minimise other distractions, such as noise, when the person is eating. Try to have essential items within the person’s reach and field of vision, being aware this may have narrowed. Observing what the person is able to locate (or not) can help you work out their visual range..
Hunger and thirst
How do you ensure a person with dementia gets the right amount to eat or drink?
The sensations of hunger and thirst are interpreted by the brain and might be disrupted in dementia. Combined with common memory and communication issues, this may mean the person is unable to tell you they are hungry or thirsty. The person may say they are hungry just after eating or claim to be ‘full up’ when you know they haven’t eaten for some time. It’s best to avoid arguments over such things which can lead to distress. Try instead introducing another activity to distract from over- eating or if not eating enough, focus on the social and enjoyable aspects of eating – preparing or sharing food and drinks together. Your activity in eating can also act as a prompt to the person to start eating and what to do next. Involvement in aspects of the process of preparing food or setting the table can help to orientate towards eating.
The mouth and swallowing
Providing a small cold drink, such as fruit juice, or a small sorbet, just before eating a meal can help produce saliva and prepare the mouth for food coming. The health of the mouth is important to general health and the enjoyment of eating. None of us are so keen to eat if our mouth hurts so one thing to consider if the person with dementia is reluctant to eat is could there be a dental problem, mouth ulcer or other source of pain or discomfort? Ensuring the mouth is clean and fresh can also be important to eating and in avoiding a common source of infection. There are a number of ways in which teeth brushing and keeping the mouth clean can be made easier or more acceptable if these have become difficult, such as using a low foam toothpaste and small headed toothbrush.
Chewing and swallowing problems – when to seek advice
Chewing and swallowing can become difficult in more advanced dementia. Signs to look out for here are food being held in the mouth, especially the cheeks, frequent coughing and choking easily. Advanced dementia is associated with reduced mobility and significant weight loss. To be sure of adequate nutrition, the safest consistency of food and how best to present it to minimise difficulties, seek support and advice from a dietician and a speech and language therapist by contacting your GP.
Physical activity – the importance of diet and exercise
Levels of physical activity and co-ordination are affected in dementia, often severely as the condition advances. People may for periods become less, or more, active and motivation can fluctuate too. This has a significant impact on appetite, eating and hydration. For example, low levels of activity can contribute to weight gain and constipation and associated pain and discomfort which the person may be unable to express verbally. Encouraging gentle activity is helpful, remembering that everyday activities like helping with housework, is still exercise. A wide range of ideas are available on chair exercises and encouraging physical activity at home.
On the other hand, some people may be restless, easily distracted, and may pace about making it difficult to sit and eat. In these circumstances try to create a calm environment and provide finger food which the person can eat whilst on the move. Thinking creatively can provide simple solutions. I recently spoke to a member of care staff, who on learning a lady with dementia had a passion for eating crisps, added nutritious snacks to her crisp packets which she ate as she walked about.
Dexterity, co-ordination, using utensils
Parts of the brain which help us to ‘get started’ in an activity like eating, recognising what items are for and how to use them, are all functions that can be affected in dementia. Again here, eating together is helpful because your actions act as a prompt. Limit the clutter on the table or tray and note if the person is struggling to use cutlery or other items and think about exactly what it is that they are struggling with. A wide range of ways to adapt cutlery and crockery are available which can make them easier to see and to handle. Using plates with a raised edge can be helpful to scoop up food. What suits best will be very individual so getting some advice is worthwhile, as is sharing your knowledge of the person and the difficulties they face with professional staff. Contact your G.P. about seeing an occupational therapist who can help you find the right items for the difficulties being experienced.
Where assistance with eating is required, there are techniques which can help a person feel more in control – which in turn can make assistance feel more acceptable to the person. Seek advice from a dementia specialist nurse or occupational therapist but remember your knowledge and understanding of the person is invaluable. Research demonstrates that when a professional team and families work together positive results with eating and drinking in advanced illness is possible.
Some medicines can affect appetite and cause other issues such as nausea, weight gain, weight loss, or constipation. If such issues arise in association with changes in medication, speak to the person’s G.P. team to discuss what can be done – alternatives may be possible.
A personal experience
We all enjoy our food better if we are comfortable, in a nice environment, have food before us we enjoy, and we are with good company. It’s important to keep the basics in mind – a visit to the toilet, washing hands and a fresh mouth before a meal. You have knowledge of the person that is important and should be captured so that if others have to provide care they can do their best to attend to the person’s preferences and make their meals as enjoyable as possible. This would include important influences over the person’s choice of diet such as religious or ethical beliefs, such as veganism. You can record (preferably together) details on a prepared personal profile such as a ‘Getting to Know Me’ document (Scotland) or ‘This is Me’ document and this can be made available to other carers at home or hospital.
1 ref. Sharp, B.K., 2019. Stress as experienced by people with dementia: An interpretative phenomenological analysis. Dementia, 18(4), pp.1427-1445.
At Vegetarian for Life, care caterers often contact us, concerned that a vegetarian or vegan resident living with dementia has lost this part of their identity, and is now ‘asking for meat’, or picking it from others’ plates. This presents a huge barrier to individuals eating in line with their religious or philosophical beliefs. Carers don’t want to distress a vegetarian or vegan by ignoring their present wishes, and may reluctantly give in to such requests. Visit Vegetarian for Life’s website for guidance on navigating this difficult terrain, and to find out more about the charity’s Memory Care Pledge, or other support for care establishments.
More information on dementia care is available on our page Living with Dementia. If you are looking for a dementia care home, or a home care company to help you or a loved one, please use our search for care tool here.