Eating and swallowing in later dementia

These changes do not arrive on a timetable, and someone can eat a full breakfast and then refuse lunch. The seven stages of dementia explains how the illness tends to progress, and eating difficulties sit mainly in the later stages it describes.

Refusing food deserves a second look before anyone decides it is the dementia. The Alzheimer's Society notes that a person may turn down food and drink because of physical difficulties such as problems with chewing and swallowing, or constipation, and that refusing food or holding it in the mouth can be how they communicate a need they cannot put into words. A sore mouth or dentures that no longer fit are worth ruling out. If the refusals keep going, the charity's advice is to speak to a pharmacist or the GP.

Weight loss is the other thing to keep an eye on. The Royal College of Physicians says that in the later stages more than two thirds of people living with dementia are likely to be at risk of malnutrition, and that slowing the decline with adapted eating and drinking is still a positive outcome. What happens when an older person does not eat enough covers the signs, and a GP can weigh your relative and refer to a dietitian.

Making the home dementia-friendly covers lighting and contrast around the kitchen and dining table, and explains why patterned tablecloths and busy crockery work against a person with dementia.

Drinks need the same thought, because a person who has forgotten to eat may have forgotten to drink too. How to get an older person to drink more has practical ideas. If a speech and language therapist has set a thickness for drinks, those ideas apply only within it.

1. 1

   Write down what you see

   This week

   Note when the coughing happens, with what food or drink, and whether their voice sounds wet afterwards. Note any chest infections and whether their clothes are getting looser.
2. 2

   Ask the GP for a referral

   Soon, and urgently if it is getting worse

   The NHS advises contacting the GP urgently, or NHS 111, if someone has difficulty swallowing, coughs while eating or keeps getting chest infections. NICE tells clinicians to consider involving a speech and language therapist when there are concerns about a person's safety when eating and drinking. Ask for that referral by name.
3. 3

   The therapist assesses the swallow

   The assessment

   A speech and language therapist watches your relative eat and drink and works out which textures they can manage safely. They may also advise on sitting position, pace, the size of each mouthful and the level of help at meals.
4. 4

   They set the texture, in writing

   The plan everyone follows

   Changes can include softer or blended food and thickened drinks. The therapist may use the IDDSI framework, which numbers drink thickness from 0 to 4 and food textures from 3 to 7. Keep the written plan in the kitchen.
5. 5

   Ask for a review when things change

   Swallowing is not fixed

   The Royal College of Physicians notes that swallowing ability and preferences fluctuate. If your relative is coughing more on the current plan, or managing better, go back to the GP or the therapist rather than adjusting it yourself.

The reason a family should not guess at textures is that the right one depends on how this particular person's swallow works, and only an assessment shows that. The Royal College of Physicians says carers may need training and support to make sure they follow the guidance on consistency and texture correctly. Ask the therapist to show you how to make up a thickened drink.

Tablets are part of the same conversation. The Royal College of Physicians notes that medicines may need to be prescribed in other forms when swallowing changes, which the doctor arranges with the pharmacist. So if tablets have become hard to swallow, ask the GP or pharmacist rather than crushing them or opening capsules yourself.

NICE is careful in its wording. Tube feeding can still be tried, its decision aid says, where the reason for the eating or swallowing problem is treatable and the person is expected to eat and drink normally again afterwards. What the guidance advises against is using a tube as the routine answer to eating difficulties that come from the dementia itself. The NICE decision aid on tube feeding in severe dementia is two pages long and written for families, and it is worth asking the team to go through it with you.

Who makes the decisionSection titled Who%20makes%20the%20decision

If your relative can still understand and weigh the choice, it is theirs. If they cannot, the clinical team decides in their best interests under the Mental Capacity Act, and the Royal College of Physicians says a decision to continue eating and drinking with acknowledged risks can be made that way. The family's part is to say what your relative valued and what they said when they could. Mental capacity and how it is assessed explains the process.

Two documents change the picture if they exist. An advance decision can refuse artificial nutrition and hydration, which includes tube feeding, but the Mental Capacity Act Code of Practice says it cannot refuse basic care, which includes the offer of food and water by mouth. Advance decisions and advance statements explains how to make one and when it applies. A lasting power of attorney for health and welfare can give an attorney the power to make decisions about life-sustaining treatment, if your relative chose to give it. Lasting power of attorney and dementia covers what to check. If neither exists and your relative can still talk about what they would want, have that conversation early.

Palliative care for dementia explains care for comfort in the later stages, and who is in the team.

Telling the carer all of this is part of the arrangement. The client contract asks the client to give full and accurate information, in advance and as things change, about known risks that affect the care, naming cognitive impairment among them. The contract also says a carer should not take on work they feel unqualified to do, and should say so. A carer who has never supported someone on a texture plan may reasonably say no, which is better than finding out at a meal.

Lunch is a natural first visit to book. The standard visits and what each covers explains the lunch call, and an hour is the minimum visit on PrimeCarers. If your relative needs somebody at every meal and through the night, live-in care for dementia puts one carer in the house who knows the plan and is there for all of it.

If you need somebody with the patience to sit through a meal, you can search for carers near you and compare their rates and dementia experience. Every carer has an online interview before they appear, and their identity, right to work and enhanced DBS on the Update Service are checked. Carers are self-employed and insured while they work. PrimeCarers does not check qualifications, training or references. Experience with dementia or swallowing plans is the carer's own account on their profile, so ask them about the meals they have helped with before.