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«Faculty for People with Intellectual Disabilities Dementia and People with Intellectual Disabilities Guidance on the assessment, diagnosis, ...»

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6. The choice of antipsychotic should be made after an individual risk–benefit analysis.

7. The dose should be low initially and then titrated upwards.

8. Treatment should be time limited and regularly reviewed (every three months or according to clinical need).

For people with Lewy Body dementia, healthcare professionals should monitor carefully for the emergence of severe untoward reactions, particularly neuroleptic sensitivity reactions (which manifest as the development or worsening of severe extrapyramidal features after treatment in the accepted dose range or acute and severe physical deterioration following prescription of antipsychotic drugs for which there is no other apparent cause).

It is important to follow good practice principles (Deb et al., 2006, Tyrer et al., 2008) in

treating people with intellectual disabilities and dementia:

For people with intellectual disabilities and dementia, any such treatments should be I considered on a best interest basis if the person is unable to provide informed consent.

People with intellectual disabilities and dementia may be unusually sensitive to I certain types of psychotropic medications due to reduced drug metabolism, reduced drug clearance and reduced plasma protein binding.

Some underlying conditions such as Lewy Body dementia may make the person I particularly sensitive to the use of even small doses of a neuroleptic, e.g. haloperidol.

For these reasons it is important to start medications at a lower dose, titrate slowly and review frequently (with a minimum of three-monthly reviews).

Every effort should be made to keep the dose at the lowest level at which the drug is I effective.

Side effects may not always be reported by the service users due to impaired I communication in many, and it is therefore essential for the prescribing clinician to make both the users and carers aware of what to look for in terms of side effects.

Use of antidepressants:

To treat symptoms of depression selective serotonin reuptake inhibitors (SSRIs) are preferred but attention is needed to the risk of developing low sodium levels. Sertraline has been found to be effective in the treatment of depression in people with dementia in a randomized control trial (Lyketsos et al., 2003). There is emerging evidence that SSRIs may be used for treatment of agitation in dementia (Nyth & Gottfries, 1990; Pollock et al., 2002,. Many clinicians prefer trazodone for which there is some evidence available for its effectiveness (Sultzer et al., 2002).

Guidance on their Assessment, Diagnosis, Interventions and Support 73

Use of mood stabilisers:

Drugs such as Carbamazepine or Valproate may be considered if there is evidence of rapid cycling mood disorder or significant mood fluctuations.

Key points Acetylcholinesterase inhibitors are used mainly in Alzheimer’s type dementia. NICE I guidance (2013) recommends their use in mild to moderate dementia to delay the progress of the illness. NICE has however restated that the difficulty in staging dementia in people with intellectual disabilities should not disadvantage them, thus introducing some flexibility for prescribers.

Psychotropic medications have only a limited role in the management of I neuropsychiatric symptoms in people with intellectual disabilities and dementia and should only be considered if other environmental/psychosocial approaches have produced only very limited or no benefit and the risk from the symptoms is assessed as high.

Antidepressant medications are useful in the management of depressive symptoms I in people with dementia and intellectual disabilities.

Caution should be exercised in the use of antipsychotic medication in the context I of the evidence of a high risk for cerebrovascular events and mortality.

Where psychotropic medications are used, target symptoms should be clearly I recorded; risks and benefits discussed with the person and/ or carers and the minimum effective dose should be used for the shortest length of time.

74 Dementia and People with Intellectual Disabilities Section 14 – Safe eating and drinking Eating and drinking are basic human functions. It is vital that the person with dementia is assisted to make eating and drinking as enjoyable and stress free as possible. Each person will have their own beliefs about food. Eating is often a social experience as well as a means of gaining nutrition. Individuals have different reactions to different foods that come from their experience, culture and taste, and these need to be taken into account in understanding the person with dementia.

As the dementia progresses, safe eating and drinking becomes more of an issue. Staff need to be flexible and person-centred, remembering that the person will have good days and bad days. This may mean that carers and staff will need to completely rethink how to approach eating and drinking for the person in order to ensure that it is a safe, enjoyable and nutritious activity.

14.1 What makes people want to eat and drink?

Each person will respond to a large number of cues that make them want to eat and drink.

These include: time of the day, smell of food, rattle of crockery and cutlery, the table being set, the colour of the food, how the food is presented and the taste of the food. Similarly there are a number of reasons that make people less inclined to eat or drink. These include when the smell is off-putting, the place is noisy or dirty, the food doesn’t look nice, the person doesn’t like the people they are sitting with, they don’t feel well or are too tired.

A person may also not wish to eat as they do not recognise that the feeling coming from within is one of hunger, as the connection between the sensation in their stomach and the thought that they need to eat is lost.

It is therefore essential that the chances of the person enjoying their food and successfully eating and drinking are maximised by paying attention to a number of factors. These


The opportunity to be involved in preparing what they eat all but vanishes. Preparing I what you eat can improve levels of wellness and positively affects a person’s ability to chew and swallow food. It also impacts on quality of life, not just from a nutritional perspective, but also in terms of wellbeing and it is a great social opportunity for people.

Promoting people to do things for themselves can have a significant impact on I improving a person’s appetite. All stages of meal/snack preparation will stimulate saliva production and activate the centres in the brain involved in swallowing.

People should be involved in every aspect of planning and preparing a meal, from I creating a shopping list, selecting the produce off the shelves, to the final serving of the meal. This will often mean thinking creatively and it may not always be about preparing a main meal, but may be providing the opportunity to do part of the task which focuses on people’s remaining abilities.

Guidance on their Assessment, Diagnosis, Interventions and Support 75 Eating in a dining room environment: a communal environment may contribute I favourably to food consumption. Set up an environment that allows the individual to wander to eat finger foods along their path. Keep auditory distractions to a minimum (noise from television, radio, and people moving in and out of the dining room).

Posture and positioning of the person is important to safe eating.

I Understanding why people need to eat and drink and ways of encouraging eating are I important, e.g. looking at what people are eating and when – including safe foods, presentation, finger foods, amount of food, and reacting promptly to eating and drinking difficulties.

14.2 Eating and drinking difficulties As the dementia progresses, eating and drinking difficulties become more apparent.

The types of difficulty can be characterised as follows:

Difficulty chewing, grinding or moving the food in the mouth: this means that food I does not break down and form a bolus and therefore cannot be propelled to the back of the mouth efficiently. Some people (particularly those with Down’s syndrome) may have a backwards/forwards motion of the tongue which is different from the more full range of movement that most other people have. This more restricted movement is also frequently observed in people who have were unable to eat a normal diet requiring them to develop good chewing patterns e.g. People who have cerebral palsy or other physical disabilities. It can also be observed in people in the advanced stages of dementia. For people with dementia this may not be a motor problem to chew, but being able to remember to chew and difficulty with the sensation in the mouth triggering the idea they need to chew.

General muscle weakness or stiffness in the face and neck area may mean that the I person experiences difficulty controlling liquids in the mouth. Liquids and soft foods may dribble out of the sides or front of the mouth or disappear down the throat in an uncontrolled fashion, possibly entering the unprotected airway.

Changes in sensation in the mouth whether reduced or heightened can drastically I affect the eating or drinking process for the person. Changes in sensation may affect someone’s tolerance of extreme temperatures or their enjoyment of certain flavours.

People with dementia often respond to stronger tasting foods.

The swallow reflex sequence can become uncoordinated. The swallow may be I triggered too early or too late. This means that the bolus or liquid will pass down the throat at a point when the airway is not properly protected. This can lead to inhalation into the larynx or aspiration onwards towards the lungs. The mouth or the throat may become full and overspill. A swallow may be triggered, but some of the residue may be inhaled into the larynx or windpipe. It may be possible to hear this if the person’s voice sounds ‘wet’ or more gruff than usual.

Saliva: We produce a large amount of saliva which we normally swallow without even I realising. Someone with a swallowing problem may appear to produce too much saliva, which then escapes from the mouth leading to drooling. Conversely, some people produce too little saliva, which can produce a dry mouth. A dry mouth makes it much harder to swallow and bacteria and organisms may begin to build up, making the person much more prone to infections such as thrush.

76 Dementia and People with Intellectual Disabilities Once eating and drinking difficulties have been suspected, it is important that an immediate referral is made to their local speech and language therapy department. Carers and staff need to be aware of the key signs to watch for: coughing, choking, a red face, and watery eyes or loss of breath during eating or drinking.

Working with carers and staff needs to be ongoing to ensure that issues that help to

minimise difficulties are recognised and acted on. These issues include:

Being aware (by keeping a food and drink diary) of what textures and liquids seem to I cause problems and which do not. Staff and carers need to avoid those that cause problems and make sure that everybody knows which they are.

Checking that dentures fit properly. It is important to minimise the number of teeth I removed as this will cause gum shrinkage and gum muscle weakness and dentures will then be harder to keep in place.

Correctly positioning the body and particularly the head may greatly assist people to I eat and drink safely. It is important that the person is referred to the speech and language therapist who will assess and advise on this together with multi-disciplinary team members.

Remembering that even if the mouth itself feels and looks empty, there may be a I build up of residue in the throat. It is advisable to encourage people to take their time, to make additional swallows, in order to clear as much of the residue down the food pipe into the stomach as possible. If left this residue may silently drip down into the airway. This is known as ‘silent aspiration’. Food and liquids silently aspirated onto the lungs may cause chest infections (aspiration pneumonia).

A consistent approach is key. All persons who are going to assist an individual to eat I and drink should ensure that they have consulted and understood any eating and drinking guidelines that are in place before they begin.

Treat each meal, snack or drink as a new episode as the difficulties will fluctuate and I people need to be aware of how the person is ‘in the moment’.

Timed snacks can improve hydration and nutrition as well as medication compliance.

I Successful feeding in dementia may take up to one hour depending on the severity of I the disease. Remember that people can become fatigued and may need a break before feeding is restarted.

Interruptions during mealtimes distracts people with dementia, resulting in reduced I nutrition and calorific intake.

Where staff or carers have concerns they need to keep a record of episodes of coughing, throat clearing, ‘wet’ voice quality, choking and also chest infections and consult a speech and language therapist.

Saliva can also be an issue for people with dementia. If people with muscle weakness are experiencing loss of saliva, etc. from the mouth then staff and carers need to gently dab away the moisture – never wipe it, as the action of wiping across the lips has the effect of stimulating more saliva, as there is a salivary gland in the chin area. Where too little saliva is being produced, the person should be offered frequent small drinks to keep the mouth hydrated and care taken with a regular oral hygiene routine. Wiping the lips in this instance may be beneficial as it stimulates the sub-lingual salivary gland to produce saliva but this needs to be discussed with a speech and language therapist or other relevant specialist.

Guidance on their Assessment, Diagnosis, Interventions and Support 77 Key points Eating and drinking are basic human functions.

I It is vital that the person with dementia is assisted to make eating and drinking as I enjoyable and stress free as possible.

All eating and drinking difficulties must be taken extremely seriously and an urgent I referral made to a speech and language therapist.

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