Originator: Ben Biffin, DietitianDate: September 2011

Version: 1Date for Review: August 2014

DGOH Ref No: DGOH/PIL/00550

A guide to good nutrition indementia for patients andcarersNutritionPatient Information Leaflet

2 15

Contact numbersIf you have any questions or are unsure about any of theinformation provided in this booklet, please contact a member ofstaff or you can call the number listed below:-

The Dudley Group NHS Foundation TrustRussells Hall HospitalDietetics Department

Name:-

Tel:-

If you have any questions or are unsure about any of theinformation provided in this booklet, please contact a member ofstaff or you can call the number listed below:-

The Dudley Group NHS Foundation TrustRussells Hall HospitalDietetics Department

Name:-

Tel:-

Local support:

The Alzheimer's society Dudley (01384 295 355) offers thefollowing services:

Home support service - Practical, personal and emotionalcare for people with dementia. Whilst offering carers a shortbreakDementia support service - Helps carers and family membersof people with dementia to understand the experience ofdementia and finds coping strategiesCarer's support groups - An open forum for carers to discussdifficulties that they are dealing withSocial clubs - Monthly, informal occasion for carers andpeople with dementia to socialise in group activitiesCarer's education groups - An opportunity for carers to furthertheir understanding of dementia, challenging behaviour andcommunications

Friendship groups for people with dementia are run alongsidesessions for carers so that carers can know their loved ones arebeing well looked after.

This booklet is based upon information provided from theAlzheimer's Society.

14 3

What is dementia?Dementia is a term for a group of related symptoms that areassociated with an ongoing decline of the brain and its abilities.Symptoms of dementia include loss of memory, confusion andproblems with speech, understanding and behaviour. Most casesof dementia are caused by damage to the structure of the brain.People with a diagnosis of dementia may need help from friends orrelatives, including help in making decisions.

How common is dementia?There are currently 570,000 people in the UK living with dementia.Dementia usually occurs in people who are 65 or over. The olderyou get, the more likely you are to develop it.

What are the types of dementia?There are many types of dementia, which each differ slightly. Themain types of dementia are:

- Alzheimer's disease - where small clumps of protein known as plaques, begin to develop around brain cells. This disrupts the working of the brain.- Vascular dementia - where problems with blood circulation result in parts of the brain not getting enough oxygen.- Dementia with lewy bodies - where abnormal structures known as Lewy bodies develop inside the brain.

But it's much easier to cope if you look after your own health andwellbeing, and there is lots of support available.

If you want to find out about getting practical help to care forsomeone with dementia or just talk to someone about a 'bad day',you can call the dementia helpline for the Alzheimer's Society on0845 300 0336.

National organisations:

Alzheimer's Society: Telephone: 0845 300 0336Website: http://www.alzheimers.org.uk

Dementia UK: Telephone: 0845 257 9406Website: http://www.dementiauk.org/

Dementia Centre: Telephone: 0800 999 2015Website: http://dementiacentre.com

Mind: Telephone: 0300 466 6463Website: http://www.mind.org.uk

4 13

What are the stages of dementia?Early stageDementia usually begins gradually with very minor changes in theperson's abilities or behaviour. At the time, such signs are oftenmistakenly attributed to depression, stress or bereavement or, inolder people, to the normal process of ageing. Loss of memory forrecent events is a common early sign. Someone with dementiamay:

Forget about recent conversations or events and repeatthemselvesBecome slower at grasping new ideas, or lose the thread ofwhat is being said, sometimes becoming confusedShow poor judgement, or find it harder to make decisionsLose interest in other people or activities.Develop a readiness to blame others for taking mislaid itemsBecome unwilling to try out new things or adapt to change

Middle stageAs dementia progresses, the changes become more marked. Theperson will need more support to help them manage theirday-to-day living. They may need frequent reminders or help to eat.Symptoms (listed on the next page) may include:

Becoming confused about where they are, or wandering offand becoming lostBecoming muddled about time and getting up at nightbecause they are mixing up night and day

Difficulties for carersIf you are caring for a person with dementia who is close to you,your relationship will change greatly as time passes. You may findtheir behaviour confusing, irritating or difficult to deal with, leavingyou feeling stressed, irritable or helpless.

Towards the latter stages of dementia you may find that the personmay become distressed or aggressive - especially if they feelthreatened in some way. Angry outbursts may occur during closepersonal care, usually because the person does not understandwhat is happening. Those caring for the person should try not totake this personally.

By learning to understand the meaning behind the actions, you willfind it easier to stay calm and deal effectively with the challengesthat arise.

As the illness progresses you may also have feelings of grief andbereavement as many changes occur with your family member orfriend. It can be difficult for carers or family members to deal withthese feelings.

Helpful ContactsWhen you are caring for someone with dementia, it can be all tooeasy to ignore your own needs and to forget that you matter too.

12 5

Becoming increasingly upset, angry or aggressive, due tofrustration and a loss of confidencePutting themselves or others at risk through their forgetfulness- for example, by not lighting the gas on the cookerBehaving in ways that may seem unusual, such as goingoutside in their nightclothesExperiencing difficulty with perception, and in some caseshallucinations

Late stageAt this stage, the person with dementia will need even more help,and will gradually become totally dependent on others for nursingcare. Loss of memory may become very pronounced, with theperson unable to recognise familiar objects or surroundings or eventhose closest to them, although there may be sudden flashes ofrecognition.

Symptoms may include:

Increasing frailty. They may start to shuffle or walk unsteadily,eventually becoming confined to bed or a wheelchairDifficulty in eating and sometimes, swallowing.Considerable weight lossIncontinence: losing control of their bladder and sometimestheir bowels as wellGradual loss of speech, they may repeat a few words or cryout from time to time

Do not feel you need to prepare elaborate meals; it isprobably better to devote your energy to ensuring that theperson eats and enjoys their food

And finally... Encourage activity, to help build an appetite.

DrinkingSome people with dementia may struggle to drink enoughthroughout the day and will be at an increased risk of dehydration.It is important to encourage fluid intake to help maintain hydrationand good health. Try the following suggestions:

Encourage them to use a small glass/ cup rather than a mugIf unsteady, use drinking cups with two handles to allow asteadier grip. These aids can be purchased from chemists oronline, although they may be expensiveOffer gentle prompts and reminders so that the personrecognises the drink in front of themOffer the person the cup rather than leaving it on a tableOffer small but frequent drinks throughout the dayTransfer drinks that are supplied in a carton with a straw to acup or glass

Take care when offering 'boiled' hot drinks - some people withdementia may lose the ability to judge temperature.

6 11

Why is nutrition important?A healthy balanced diet provides all the nutrients the body needs inthe right amounts to stay fit and well. Eating a nutritious balanceddiet and maintaining a healthy body weight is just as important forpeople with dementia as anyone else.

Eating healthily does not mean that certain foods have to beavoided. Everything in moderation and a little bit of what you fancyis the key to enjoying food and staying fit and well.

Supporting a person to eat and drinkHere are a couple of tips and suggestions to help make mealtimesmore enjoyable and more nutritious for people with dementia:

Ensure that mealtimes are relaxed and unhurried. Allowplenty of timeEnsure that there are no unnecessary distractions, such asexcess noise, or a television left on in the backgroundIf a person is agitated or distressed, do not pressurise them toeat or drink. Wait until the person is calm and less anxiousbefore offering food and drinkEnsure that the person is alert, comfortable and sitting uprightor, if in bed, well-positioned, before offering food and drinkMake food and meals look good enough to want to eat.Colourful food such as a bowl of chopped fruit is attractiveand eye-catchingTry not to overload the plate with too much food, offer smallportions at frequent intervals throughout the dayBe flexible and make the most of 'good eating' times. Somepeople eat better at certain times of the day, whether this is atbreakfast or later in the day at teatimeIf the person appears to have difficulty using cutlery, you mayneed to prompt the person and guide their hand to their mouthto remind them of the process involvedIf you have to assist a person to eat and drink, talk about whatyou are offering them to help remind them of tastes andflavours

10 7

The eatwell plate shows the main food groups that we need toinclude in our diet, to achieve a healthy balanced diet. By eating aselection of foods from all of the groups on the eatwell plate abalanced diet can be achieved that includes sources of protein,carbohydrate, fat, vitamins and minerals.

Difficulties eating in dementiaAs dementia progresses, difficulties with eating and drinking maybe experienced. These difficulties may vary from one individual toanother but may result in weight loss and deteriorating health. Themost common causes for difficulties with eating in dementia are:

A poor appetite and difficulties with chewing and swallowingChanges in food preferenceProblems with co-ordinationIn the later stages of dementia, an inability to recognise thesignificance of food

Overcoming difficulties with eating indementiaFood fortification

Some people with dementia may struggle to eat enough throughoutthe day and may suffer from a poor appetite. It is important to get abalanced diet and to maintain a healthy weight. Here are a fewsuggestions of things that you can do:

Cut food up, prior to serving so that the person can eat it witha spoon enabling them to continue to eat independentlyUse non-slip mats to prevent the plate from sliding on thetableOffer assisted cutleryIf cutlery is difficult to use, offer finger foods which can beeasily eaten and, again, enable the person to continue to eatindependently

Ideas for finger foods at each meal time

- Incorporate snacks and nourishing drinks between meals, such as milky drinks, scones, malt loaf, cakes, crumpets, yoghurts, custard-based puddings and cheese and crackers.- Use 'full fat' varieties of foods rather than 'diet' versions.

If a person is eating less, it is important to encourage as nourishinga diet as possible. You may want to try adding the following foodsto your normal diet to increase the calorie and protein content:

- Full fat milk - Condensed milk- Skimmed milk powder - Full fat yoghurts- Cheese - Custard- Butter - Ice-cream- Cream - Jam, honey and syrups

Difficulties with chewing and swallowing

Poor dental health or ill-fitting dentures can affect a person's abilityto chew or eat certain foods. Some people may not be able tocommunicate that they have toothache and may simply declinefood if it hurts to eat. Regular dental care is vital to ensure thatgums and teeth are healthy and that dentures fit well. Adequateand regular cleaning of teeth and dentures is important.

Any noticeable difficulty with swallowing must be assessed andmanaged appropriately by a Speech and Language Therapist. Aperson who has difficulty swallowing may hold food in their mouth,chew continuously and cough during or after eating.

If the person is having difficulty chewing or swallowing food, it maybe worth considering a diet of a modified texture i.e. offering softerfoods or pureed foods.

Changes in food preference

A person may experience a change in food preferences asdementia progresses. They may start to enjoy flavours and foodsthat they were not previously keen on, or they may take a dislike tofood that they have always liked. This may be as a result ofdamage to specific areas in the brain or a desire for strongerflavours as taste perception alters with age.Suggestions for people whose food preferences are altering:

Add a small amount of sugar or honey to savoury foodsTry roasting with honey or adding a honey glazeBe adventurous and cook new dishes that are stronger intaste or that the person may not have previously experiencedServe sweet sauces or chutneys with main coursesCook with the addition of herbs and spices

Problems with co-ordination

Some people with dementia find eating with cutlery or drinking froma glass difficult because they have problems with co-ordination.This can be frustrating and they may feel embarrassed if they dropfood or if the task becomes messy. This can be sufficient to put aperson off eating at mealtimes. The following may help:

8 9