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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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40 Dementia and People with Intellectual Disabilities Section 8 – Additional health co-morbidities associated with dementia As we get older we become more susceptible to additional health challenges, and this is no different for people diagnosed with dementia. However, there are some health conditions that are specifically associated with advancing dementia and these should be taken into consideration.

8.1 Epilepsy 8.1.1 Prevalence Over 80 per cent of people with Down’s syndrome and dementia develop seizures (Menendez, 2005). There are two peaks for the development of epilepsy in people with Down’s syndrome, one in adolescence and one in later life. Older people with Down’s syndrome (over 45 years) are more likely to have seizures than younger people, and the development of epilepsy in later life should raise the possibility of Alzheimer’s disease. A younger age of onset of dementia is associated with a higher risk of developing seizures (Menendez, 2005).

8.1.2 The nature of seizures The most common seizures in people with Down’s syndrome and dementia are myoclonic and tonic-clonic types although the whole range of generalized and partial seizures may be seen.

In the general population, people with Alzheimer’s disease generally develop seizures I at a late stage of dementia but in people with Down’s syndrome seizures can be a presenting symptom. Seizures are generally thought to occur earlier in the course of the illness in people with intellectual disabilities than is found in the general population.

A proportion of people with Down’s syndrome who develop dementia will have a I previous history of epilepsy, and there may be a change in seizure frequency, pattern or severity with the onset of dementia.

Myoclonic seizures tend to occur more frequently and may initially present as mild I jerks, although the intensity and frequency can vary considerably. As the dementia progresses, they can become both more severe and more frequent. Tonic clonic seizures are more obvious and similar precautions, as in people without dementia, should be taken.

8.1.3 Investigations and diagnosis The diagnosis of epilepsy is clinical, and is usually made following two witnessed, unprovoked seizures. Where people with a progressive condition such as dementia, which is associated with the development of epilepsy, have a seizure, many clinicians will initiate treatment after the first seizure rather than waiting to confirm a second seizure (particularly where the person has had seizures before or where the person has had a tonic clonic seizure).

Guidance on their Assessment, Diagnosis, Interventions and Support 41 Investigation guidance for the diagnosis of epilepsy suggests a range of investigations including EEG, CT/MRI scans, ECG and blood tests. Whilst a full physical examination and blood tests should always be considered, neuroradiological investigations and EEG’s should be undertaken if there is a suspicion of a space occupying lesion or some other potentially treatable cause of dementia.

8.1.4 Risks Seizures are associated with additional physical health problems ranging in severity from physical injury to death. The risks increase with poorly controlled seizures and polypharmacy. It is important to establish a monitoring system so that staff and carers can take responsive action when needed. Staff and carers should be encouraged to maintain regular seizure charts to record the nature, frequency, intensity and duration of seizures, and to complete appropriate risk assessment. Issues relating to both the seizures and associated treatments should be addressed, including eating and drinking guidelines, management of falls and personal care.

8.1.5 Management Drug management – seizures in people with dementia generally respond to a single a) antiepileptic drug. Drugs with a broad spectrum of action are normally used as the first line treatment. It is important to note, when choosing a drug, the potential for further impairment of cognitive function because of the sedative effect of the antiepileptic drug. For this reason, newer, less sedating drugs are usually chosen.

Where the presenting seizures are myoclonic, Levetiracetam or Sodium Valproate are first line choices (remember that myoclonic seizures can be worsened by administering Carbamazepine, Gabapentin, Pregabalin and perhaps Lamotrigine).

Where the presenting seizures are tonic-clonic in nature, Lamotrigine, Levetiracetam and Sodium Valproate are first line choices. The following good practice principles

should be borne in mind:

i. Promote the use of a single medication whenever possible.

ii. The treatment goal should be a healthy balance between quality of life and seizure control.

iii.Unacceptable side effects should not be present and the prescriber should take immediate action if side effects are reported. Careful monitoring of the side effects by staff and carers is the key and it is important for clinicians to explain what to look for in relation to side effects.

iv. The care plan should cover how to minimize seizure related risks especially in relation to falls and injuries.

v. Avoid Phenytoin as this causes significant cognitive slowing and can debilitate an individual with limited cognitive reserve.

Use of rescue medication – Midazolam is currently the treatment of choice for b) prolonged or clusters of seizures. This can be administered via buccal or intranasal routes. The standard doses of both are 10mg for adults weighing more than 50kg.

Training for staff and carers in the use of rescue medication is essential. The use of rescue medication should be documented in the person’s care plan.

42 Dementia and People with Intellectual Disabilities Side effects – The main side effects of Sodium Valproate are weight gain, gastroc) intestinal problems, and a negative impact on cognitive function. The main side effects of Levetiracetam are cognitive slowing, (particularly if the dose is escalated rapidly) and gastro-intestinal. Some clinicians report behavioural change, this is almost certainly related to side effects and rapid dose escalation. With Lamotrigine, the concerns are for skin rash and gastro-intestinal side effects. With diminishing cognitive reserve, drugs that effect cognitive function have a much more dramatic effect meaning that, for example, sedation can be a significant problem.

d) Do’s and don’ts

• Do not use rescue medication unless there is a clear indication and this is documented in the care plan.

• Do train carers and provide appropriate information.

• Remember that quality of life has a higher priority than total seizure freedom.

• Remember that the presence of active epilepsy should not limit community participation.

• Do monitor seizures and the side effects of anti-epileptic drugs.

• Remember that both seizures and drug side effects can affect the person’s ability to eat, drink and function effectively.

Key points The occurrence of seizures for the first time is very common in people with Down’s I syndrome who have developed dementia.

The use of a single antiepileptic medication should be encouraged.

I Careful monitoring is required of seizure patterns and side effects of medication.


8.2 Pain Poor recognition and treatment of pain in people with intellectual disabilities and dementia is common. Many issues contribute to the low level of pain recognition. These


• Staff attitudes towards, and experience of, ‘behaviour that challenges’.

• Diagnostic over-shadowing.

• Problems with communication.

• Beliefs about pain thresholds.

• The impact of past treatment on willingness to complain of pain.

• The use of temporary agency/bank staff who are less likely to observe a change in a person’s level of distress.

Sometimes staff are not sufficiently aware that people with intellectual disabilities who are getting older will experience painful conditions, such as arthritis, that can be associated with older age. Difficulties are sometimes ascribed to the dementia process rather than there being a consideration of whether people are in pain.

Research and practice both indicate that there is inadequate training about dementia and people with intellectual disabilities of staff, at all levels and from all professional backgrounds. In addition, little attention is paid to the recognition and management of pain in this group.

Guidance on their Assessment, Diagnosis, Interventions and Support 43 There is also little use of pain assessment and recognition tools. There is a range of effective pain/distress tools available for staff and carers to use to identify pain or distress in people with intellectual disabilities and dementia. Tools to consider include the Abbey Pain Scale (Abbey et al., 2004) and the Disability Distress Assessment Tool (DisDAT) (Regnard et al., 2007).

Key points Pain recognition and management for people with intellectual disabilities and I dementia is often very poor.

Diagnostic overshadowing is a frequent occurrence, and staff are often unaware of I the range of painful health conditions that may present with increasing age.

There are tools available to help staff and carers identify pain in people with I intellectual disabilities.

8.3 Sleep disorders People with intellectual disabilities have a high prevalence of sleep difficulties which worsen with age and with associated conditions such as dementia. The sleep disturbances in dementia typically include a reversal of the sleep-wake cycle (sleeping during day time and wandering at night time) and a reduction in the slow wave sleep; which may be due to the loss of cholinergic nerve cells.

Clinicians should exclude the following treatable conditions or situations before

considering biological attributes (loss of cholinergic neurons):

Co-morbid psychological problems including depression, anxiety, fear and I nightmares.

Alcohol/substance misuse.

I Physical health problems, e.g. pain, epilepsy, sleep apnoea, heart-failure, respiratory I disorders, nocturnal enuresis.

Side-effects of medication, e.g. stimulant drugs.

I Poor sleep hygiene – uncomfortable bed, noisy household, poor light and I temperature adjustment, late evening coffee and recent change in the environment.

People with intellectual disabilities and dementia should have a routine assessment of sleep hygiene. Associated factors can be easily overlooked, especially in people with intellectual disabilities who may have poor communication skills. The assessment and the sleep history

from the carer should include the following:

The person’s sleep pattern.

I Information on sleep hygiene, bedroom and bedtime routine.

I Onset, duration and nature of the problem (e.g. difficulty in going to sleep, frequent I awakening, early morning insomnia, motor activities, snoring during sleep and evidence of daytime sleepiness).

Effect of insomnia on the person and others including family and/or carers.

I Past sleep difficulties and previous treatments.

I Psychiatric and medical diagnoses (including epilepsy).

I Current medications.

I Family history of sleep problems.

I Risks associated with sleep difficulties, e.g. wandering behaviours or falls.

I 44 Dementia and People with Intellectual Disabilities Accurate information is required to make an informed decision about the nature of an individual’s sleep pattern. This can be difficult if there are no informant reports available.

The use of assistive technology or waking night staff has helped greatly in trying to provide some of the answers, but is not a panacea. Some effort may be required to get adequate sleep data; however, accurate information is required to inform the appropriate management strategies. Consideration should also be given to the use of, for example, the Epworth Sleepiness scale (Johns, 1991) or related scale used by local sleep apnoea clinics, in the event of daytime sleepiness in order to establish whether onward referral to a sleep clinic is warranted.

8.3.1 Management The approach to managing sleep disorders is, first and foremost, to ensure the problem is appropriately understood and that there are adequate checks and balances in place to ensure that interventions can be monitored, in order to understand the outcome of each intervention. The least restrictive options should be used first.

Treat any associated physical and/or psychological problems.

I Use non pharmacological strategies (sleep hygiene).


• Encourage daily activities and if possible exercise.

• Avoid day time napping.

• Reduce caffeine and alcohol intake before bed time.

• Eliminate factors that impede sleep (watching TV into the early hours).

• Use the bed just for sleeping.

• Set and maintain a regular routine of rising and retiring at the same time everyday.

• Ensure sleeping environment is conducive to sleep.

If the above approaches do not produce any significant benefits and the risks continue, a pharmacological approach may be considered along with non-pharmacological approaches.

The pharmacological approaches include the use of:

Melatonin – recently licensed under the name of Circadin in patients over the age of I 55 (there is an age related decrease in endogenous melatonin secretion which contributes towards age related insomnia).

• Z-drugs (Zopiclone, Zolpidem and Zaleplon).

Benzodiazepines (Temazepam, Loprazolam or Lormetazepam).

I The choice of medication should depend on the individual patient’s needs and should be

based on NICE Guidance CG 76 (Clinical Update 2009):

Melatonin can be used for long-term insomnia in those over 55 (with or without I dementia), licensed preparation is long-acting Circadin. Monitor results, if improvement after three weeks, treatment can be extended to 10 weeks in the first instance.

Use short acting benzodiazepines (Temazepam, Loprazolam or Lormetazepam), but I be careful about the long-term effects of such drugs.

Consider use of z-drugs (Zopiclone, Zolpidem and Zaleplon) as an alternative.

I There are no differences in the efficacy of z-drugs and if one of them is not effective I the others should not be used.

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