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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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reducing the need for restrictive interventions (DH, 2014), British Psychological Society guidelines (BPS, 2004) and the joint guidelines of the Royal College of Psychiatrists, the BPS and the Royal College of Speech and Language Therapists (RCPsych et al., 2007). PBS emphasises person-centred values, aims to enhance community presence, increase personal skills and competence and ensure dignity and respect is maintained for the person being supported. When a diagnosis of dementia is suspected a shift in value from increasing skills to maintaining skills can be helpful in terms of reducing stress of the individual.

In all cases where there is behaviour that challenges, the standards of assessment of the behaviour and subsequent intervention should occur as outlined in Challenging behaviour: a unified approach (RCPsych et al., 2007) This includes ensuring that any intervention addresses the person, the environment and the interaction between the two. As the report


‘A comprehensive assessment should address: a functional assessment of behaviour, underlying medical and organic factors, psychological/psychiatric factors. Detailed functional assessment and diagnosis are both integral features of an assessment of challenging behaviour and should lead to a clear formulation of the presenting problem. Interventions should be delivered in a person-centred context and a framework of positive behavioural support. They should include proactive and reactive strategies. Interventions described include psychotherapy, communication, positive programming, physical and/or medical and psychopharmacological.’ (p10).

Additional aspects, related to the dementia, may need additional consideration in the

assessment of the behaviour of concern:

The problem behaviour may be transitory to the current stage of the person’s I dementia and not need an intervention. Similarly, it may be possible to withdraw interventions if/when the person’s skills and behaviour change again.

The situation should be viewed through the eyes of the person with dementia I – i.e. their current reality. Continual correction by staff/carers of a false reality (e.g. person with dementia asking when a dead parent will visit) will not reduce their immediate confusion and distress. Emphasis should be on validation of feelings rather than the ‘truth’ of the situation.

The behaviour should be viewed as an attempt by the person to communicate or to I make sense of a bewildering environment (e.g. GP practice waiting room is confused with an airport lounge).

64 Dementia and People with Intellectual Disabilities The behaviour may be an exacerbation or return of previous behaviours. If the I person had difficult behaviours/personality traits previously, these may return/reoccur with roll back memory.

The behaviour may be caused by a return to a long-term memory that is now I inappropriate, e.g. childhood urinating outdoors in the countryside whilst on long walks.

There may be an underlying neurological change, e.g. taste bud changes leading to I food fads and a liking for stronger flavours, refusing baths resulting from problems with depth perception and/or stepping into the bath.

Simple and practical solutions may work e.g. a net to catch items thrown out of the I window.

Simple environmental alterations may alter the behaviour e.g. removing a mirror.

I There is a good description of many of the most common problem behaviours seen in dementia in Dodd et al. (2009) Down’s syndrome and dementia resource pack. Throughout the progress of the dementia, any changes should be clearly documented. There are tools available to facilitate this, e.g. Down’s syndrome and dementia workbook (Dodd et al., 2006), and care mapping approaches (Brooker & Surr, 2005).

12.4 Psychological interventions Within the literature emphasis has been placed on assessment and diagnosis. However, psychological interventions described in the general dementia literature can be adapted for use with people with intellectual disabilities. Interventions need to consider the multiple influences on behaviour (behavioural, systemic and biomedical) in order to support the individual and carers to understand, cope and manage behaviour and emotional distress (Kalsy-Lillico, 2014). This approach places responsibility on the system to change and to both communicate effectively with the individual whilst enhancing the person’s current capabilities. Kalsy-Lillico et al. (2012) describe psychological interventions in relation to four orientations: behavior, emotion, cognitive and stimulation. Table 3 presents a framework for organising psychological interventions and practices into these four broad groups. We would also recommend the use of systemic approaches for working with families and staff teams. Intensive interaction also appears useful in enabling staff teams to communicate with a person at their current level of ability.

Guidance on their Assessment, Diagnosis, Interventions and Support 65 Table 3: A framework for psychological interventions. Source Kalsy-Lillico et al., 2012 quoted in Watchman, 2014.

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66 Dementia and People with Intellectual Disabilities

12.5 Other interventions There are also many useful non-dementia-specific interventions available. All depend on competent staff assessing and intervening as appropriate at the level that is required (i.e. individual/ family/service). The main interventions are outlined below in Table 4.

Table 4: Summary of useful interventions to improve the care of people with dementia

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Key points It is important to utilise the skills of the multi-disciplinary team to support the I individual with intellectual disabilities and dementia and their network of support.

A range of interventions should be available to meet the person’s need as their I dementia progresses.

Other agencies as well as those in the statutory sector can help to support the I person and their carers.

68 Dementia and People with Intellectual DisabilitiesSection 13 – Medication

13.1 Anti-dementia medications in people with intellectual disabilities and dementia The degeneration of nerve cells in the brain leads to a reduction in neurotransmitters (a group of chemicals which have an important role in the transmission of signals between nerve cells). The neurotransmitter Acetylcholine is particularly affected in Alzheimer’s disease. Acetylcholine plays a key role in the way the brain processes and consolidates information.

All the anti-dementia medication, with the exception of Memantine, increase the level of Acetylcholine available for transmission of nerve signals by delaying its breakdown. This is achieved by inhibiting an enzyme – Acetylcholinesterase – which is responsible for Acetylcholine breakdown and normally helps to maintain the balance of chemicals in the brain. Another enzyme involved in the breakdown is Butyl Cholinesterase and one of the anti-dementia drugs (Rivastigmine) inhibits this enzyme in addition to its effect on Acetyl Cholinesterase. It is important to note that none of the anti-dementia drugs developed to date are disease modifying; rather, they treat symptoms, but are unlikely to have a significant impact upon the pathological processes and are therefore not considered to prolong life.

Acetylcholinesterase inhibitors are used mainly in Alzheimer’s type dementia, but I also have demonstrable improvements in other dementia types, particularly Lewy Body dementia NICE guidance – CG 42 (2012) recommends the use of Acetylcholinesterase I inhibitors for mild to moderate Alzheimer’s dementia to delay the progress of the illness. Memantine is to be used in those individuals with moderate dementia or where the Acetylcholinesterase inhibitors have proven unsuccessful (due to side effects or unsuitability). 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.

These medications can also be used in the management of behaviour/psychological I problems in people with Alzheimer’s disease and Lewy Body dementia where psychological/environmental measures alone are not successful.

Although there is no conclusive evidence that these drugs are effective in slowing I cognitive decline in people with intellectual disabilities, the available evidence suggests that they may improve the quality of life both for the person and their carers.

Guidance on their Assessment, Diagnosis, Interventions and Support 69 Table 5: Anti-dementia medications and reviews of their effectiveness

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At present there is no known cure for Alzheimer’s dementia. Use of anti-dementia I drugs at best may improve global functioning or reduce the rate of decline significantly. The natural progression of the disease may be delayed for a period by the medication but ultimately will continue. Eventually tolerance to the medication may decrease with an increased susceptibility to side effects. At this point, medication will need to be discontinued. It is therefore imperative to make it clear to carers and service users at the outset that the medication may be withdrawn at some point in the future.

There is anecdotal evidence to suggest that people with Down’s syndrome respond I well to lower doses of the medication. It is, therefore, feasible to maintain treatment at the lowest effective dose. If symptoms re-emerge at a later stage, the dose can be increased.

The effect/side effects of the medication should be monitored closely. This can be I done using a number of different tools, but as general principle should include measures of cognitive, social and adaptive skills. Medication should be used for as long as it is effective (i.e. stabilizes or delays the progression of symptoms).

There are a number of case studies, audits and anecdotal evidence that suggests I people with Down’s syndrome tolerate Acetylcholinesterase medication well and that it is perhaps more effective at managing the symptoms of dementia in people with Down’s syndrome than it is in the general population.

Guidance on their Assessment, Diagnosis, Interventions and Support 71 There is a theory that myoclonic epilepsy is mediated via cholinergic pathways.

I Myoclonic seizures are commonly associated with the epilepsy that occurs in people with Down’s syndrome and Alzheimer’s dementia. Although the Acetylcholinesterase inhibitors do not increase cholinergic pathways per se, they do improve the efficacy of neurotransmission. It is thought that this may result in reduced myoclonic seizures in those people taking this medication. There have been no published trials and there is no firm evidence to support this at present, but it is important to monitor the onset and progression of neurological symptoms such as myoclonic epilepsy as part of clinical follow-up following initiation of treatment.

There are no longitudinal studies that describe the progress of dementia in people with I Down’s syndrome. Although post mortem studies detail that neurofibrillary tangles and neurofibrillary plaques are found in people with Down’s syndrome over the age of 40, there is still a significant distribution in age of diagnosis of dementia. This may in part account for the significant variation in life expectancy following the diagnosis.

13.2 Psychotropic and other medications in people with intellectual disabilities and dementia.

Use of psychotropic medications to control behaviour problems in dementia should only be considered as a last resort. The vast majority of people with intellectual disabilities and dementia with behaviour problems can be managed with environmental and other psychosocial approaches which are detailed in this guidance in Sections 11 and 12. Every effort should be made to carry out a thorough assessment to determine the reasons for such behaviours and take the necessary remedial actions (BPS, 2004; RCPsych et al., 2007).

In spite of the use of environmental and psychological interventions, there may be a small group of individuals with dementia who may benefit from use of psychotropic medications.

The following are examples where a use of a low dose of medication may be considered:

The presence of delusions and hallucinations causing significant distress may warrant I the possible use of antipsychotic medications.

People with depressive symptoms may benefit from an antidepressant treatment.

I In addition, there will be a small number of people with behaviour problems where I clinicians would consider psychotropic medications to minimize the risk to the individuals themselves or other people.

In these situations medications are considered as an option due to one of the I

following reasons:

– the behaviour is continuing with significant risk to self or other people in spite of the use of the psychosocial / environmental approaches;

or – a short-term management where it is not practically possible to achieve the risk reduction with any other measures immediately.

The NICE guideline CG 42 on dementia (NICE, 2012b) states that ‘people with Alzheimer’s disease, vascular dementia, mixed dementias or Dementia with Lewy Bodies with severe non-cognitive symptoms (psychosis and/or agitated behaviour causing significant distress) may be offered treatment with an anti-psychotic drug after the

following conditions have been met”. The conditions listed are:

72 Dementia and People with Intellectual Disabilities

1. There should be a full discussion with the person with dementia and/or carers about the possible benefits and risks of treatment. In particular, cerebro-vascular risk factors should be assessed and the possible increased risk of stroke/transient ischaemic attack and possible adverse effects on cognition discussed.

2. Changes in cognition should be assessed and recorded at regular intervals.

Alternative medication should be considered if necessary.

3. Target symptoms should be identified, quantified and documented.

4. Changes in target symptoms should be assessed and recorded at regular intervals.

5. The effect of comorbid conditions, such as physical illness, pain and depression, should be considered.

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