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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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Glasgow Depression Scale (Carer Supplement) – GDS-CS (Cuthill et al., 2003). This is a 16-item questionnaire about depressive symptoms, completed by a carer. It is designed to be applicable to people with intellectual disabilities. No cut-off scores are suggested by the authors, so its usefulness depends on repeat completion, although one-off use can highlight obvious areas of concern.

6.5.3 Measure of anxiety Glasgow Anxiety Scale (Mindham & Espie 2003) is a 27-item tool to help discriminate anxious from non-anxious clients with mild intellectual disabilities. It is reported to have good test–retest reliability and internal consistency.

6.5.4 Carer burden Caregiver Activity Survey–Intellectual Disability – CAS–ID (McCarron et al., 2002) provides a measure of carer burden that can be helpful as a measure of increasing care needs and therefore in determining level of social care required. Carers record the amount of time needed to care for a person with intellectual disabilities in a 24-hour period, across eight domains such as nursing care, behaviour, supervision and personal hygiene. Care staff require careful instructions to complete it reliably.

6.5.5 Life events scales These are useful to gauge whether the presenting symptoms may be attributable to an adverse life event. There are many different ones available or they may be designed by the assessor to cover typical life events occurring in the past two years.

Guidance on their Assessment, Diagnosis, Interventions and Support 31

6.6 Assessments of adaptive functioning 6.6.1 Assessments of daily living skills through direct observation of the person If repeated at intervals, these can shed additional light on changes in skills. The Assessment of Motor Process Skills (AMPS, Fisher, 2006) is utlised in some services, although its delivery is limited to occupational therapists who have received specialist training, and it can be hard to generalize the findings.

6.6.2 Assessments of daily living skills completed with a carer If repeated at intervals, these can shed additional light on changes in skills. There are

many to choose from including:

AAMD Adapted Behaviour Scales, 1974 revision – ABS (Nihira et al., 1974), which is a • standardised measure of daily living skills and maladaptive behaviour. It can be useful for assessing those with profound intellectual disabilities, who cannot undertake direct assessments, but may be cumbersome to complete.

Hampshire Social Services – Staff Support Levels Assessment (Hampshire Social • Services, 1987) – a 32 item assessment which has behavioural anchors and therefore reports excellent test –retest validity and inter-rater reliability.

Vineland Adaptive Behaviour Scales: Second Edition (Sparrow et al., 2007) provides • analysis of a broad range of skills and behaviour. These include communication, daily living skills, socialisation, motor skills and maladaptive behaviour. Vineland Adaptive Behaviour Scales: The Second Edition is available in both long and short form, providing either a summary assessment of adaptive behaviours or a more detailed assessment. Semi-structured interview and questionnaire formats make it easier to assess those who have difficulty performing in test situations. It covers 0–90 years. It is an American tool and hence some of the items will be unfamiliar to UK users, and like the ABS and ABAS-II may be cumbersome to compete.

Adaptive Behaviour Assessment System-II – ABAS-II (Harrison & Oakland, 2003) • provides a comprehensive norm-referenced assessment of the adaptive skills of individuals aged from birth to 89 years. The clinician can use the ABAS–II to diagnose and classify disabilities and disorders; identify an individual’s strengths and limitations; and to document and monitor the individual’s performance over time. It provides standard scores that are directly comparable to those found in the Wechsler IQ tests. It too is an American publication.

In looking at changes in adaptive functioning, it is important to assess not only the ability of the person to complete each task, but to probe carefully whether there is a qualitative change in performance of each task.

6.7 Who conducts assessments and how are they organised?

A dementia care pathway is helpful to guide the multi-disciplinary team through the sequence of events from referral, through screening and diagnosis, to treatment/intervention and end of life care. It helps to ensure a co-ordinated approach and effective multi-disciplinary working. Typically, a community nurse may conduct the health screen as the first stage of assessment, in partnership with the GP and/or intellectual disabilities psychiatrist for necessary additional tests or investigations.

32 Dementia and People with Intellectual Disabilities The assessments of memory, mood and behaviour are often conducted by clinical or other qualified psychologists but in some cases, may be undertaken by other multi-disciplinary team members. The need to refer for specialised psychological assessment for people with intellectual disabilities was identified in Department of Health guidelines for GPs in 2014 (Barrett & Burns, 2014). There is a need to ensure that non-psychologists undertaking such assessments are suitably trained in undertaking psychometric assessment that are well supervised in the formulation and interpretation of the data. This is commonly provided by clinical or other qualified psychologists.

AMPS assessments, if used, require special training (usually the preserve of occupational therapists). The role of the intellectual disabilities psychiatrist or clinical or other qualified psychologist is crucial to making the differential diagnosis once all the assessment data have been collected.

Some services have a dedicated or virtual team using an agreed battery of assessments (e.g.

Cairns et al., 2010; Jervis & Prinsloo, 2007; McBrien et al., 2005). This may be known as a memory clinic or dementia assessment/screening programme. The team should at the minimum include a psychiatrist in intellectual disabilities, clinical or other qualified psychologist and community nurse.

6.7.1 Where to see people/observations Careful attention needs to paid to where, when and how to assess individuals. A holistic assessment should include meeting the person being assessed and their carers in their normal living and daytime environments. Cognitive assessments may be more effectively offered in a healthcare or similar setting if this can provide consistency for repeat assessment and provide standardised testing conditions that are free of distractions and give an appropriate context. However, this would need to be balanced with potential client anxiety and a better picture of functioning which can be achieved at the person’s home or other place preferred by them.

6.7.2 Explaining assessments to people with intellectual disabilities It is important that the assessment process is discussed with the person with intellectual disabilities, and that their consent to participate is obtained. People will need to have different communication methods used that are tailored to the individual, including clear verbal communication and the use of picture booklets to explain the assessment process.

Explanations should be related to people’s prior understanding of the issues, and couched in a way as not to cause the person anxiety, with an emphasis on helping people to understand the process and the support available. Assessment of the person’s capacity may need to be undertaken, and where the person does not have capacity, the decision re assessment needs to be made using a best interest process.

6.7.3 Conditions for reassessment Repeat cognitive assessments need to be rigorously administered and interpreted to take account of normal fluctuations in the assessed person’s performance (e.g. tiredness, mood, good day/bad day), specific changes (e.g. hearing aids, glasses, medication effects), testing environment changes (place, layout, distractions) and tester effects (skills, experience, relationship with the person with intellectual disabilities, testing style, administration and scoring anomalies). Ideally the same tester should use the same tests in the same Guidance on their Assessment, Diagnosis, Interventions and Support 33 environment using strict criteria for similar administration/prompts, and where possible seeking information from the same informant on each occasion, although this may not be possible in practice. The standard error of measurement and normal ageing deterioration must also be considered when considering results showing some evidence of cognitive deterioration.

Key points Multi-disciplinary assessment is important.

I Assessments should include direct assessment of the person together with I preferably, multiple-informant based questionnaire/assessments.

Staff undertaking psychometric assessment as a part of the assessment process need I to be suitably trained in psychometrics and receive appropriate supervision.

Assessment for other co-morbid conditions is essential.

I Consideration should be given to practical issues in assessment (e.g. location).

I Consider test re-test issues (e.g. different informants/testers).


6.8 Neuro-imaging 6.8.1 Indications The most consistent structural change in the early stage of Alzheimer’s disease is the atrophy of the medial temporal lobe.

People with Down’s syndrome have medial temporal lobe atrophy even without dementia.

However, normative values have not yet been established, so neuro-imaging currently has limited value in the early diagnosis of Alzheimer’s disease in people with Down’s syndrome.

Its value is mainly to rule out structural lesions other than atrophy (e.g. space occupying lesions). It should therefore be used only when the clinical picture suggests the possibility of such lesions.

MRI scans have a number of advantages over CT scans. However the sensitivity of CT scans has improved considerably and the procedure is shorter and less complex than for MRI scans.

6.8.2 Informing and preparing Neuro-imaging requires explicit informed consent. Detailed information regarding the rationale and the procedure should be given to the patient in an appropriate user-friendly format. Assessment of capacity will be needed to identify whether the individual is able to provide valid consent for the procedure. Where the person does not have capacity best interest principles will need to be applied.

Anxiety about the procedure can be allayed by a visit to the radiology unit and familiarization with the procedure, and occasionally sedation may be required.

34 Dementia and People with Intellectual Disabilities 6.8.3 Process Although, with adequate preparation, some people with intellectual disabilities may be able to go through the procedure without any other interventions, others may benefit from the use of one dose of oral anxiolytic medication such as lorazepam or diazepam an hour beforehand. Some clinicians prefer to use buccal midazolam, which provides rapid and short-term sedation and therefore may be given immediately before the procedure. Some individuals may find it difficult to have a scan in spite of all these measures.

Generally, the MRI procedure is longer and more anxiety provoking. In these situations, discussion with the radiologist may be helpful in deciding if CT can be used as an alternative. New generation CT scans are much more user friendly and less anxiety provoking.

If the individual clearly needs neuro-imaging but is unable to co-operate in spite of all these measures, it can be undertaken under general anaesthesia. However, risks and benefits should be evaluated and thorough discussion held with the carers and other professionals to arrive at a best interests decision, if the person lacks the capacity to consent to this specific investigation. If the person has the capacity to consent to the scan it is for him/her to decide whether or not to have the scan, after being given clear information on the procedure, risks and benefits.

6.8.4 Sharing the findings It is important to share the findings of the scan with the person with intellectual disabilities, carers and other professionals. This should include the nature of the findings as well as implications for the management. This discussion should be clearly documented.

Key points Neuro-imaging (CT/MRI) is not an essential investigation for the diagnosis of I dementia in Down’s syndrome.

It may be of value where other brain lesions/vascular dementia are suspected.

I New generation CT scanners are as sensitive as MRI scanners and may be more I acceptable for people with intellectual disabilities.

Amyloid PET scans may become more available in the near future, but its value in I the diagnosis of dementia in individuals with Down’s syndrome who all have amyloid deposits in their brains remain uncertain.

Guidance on their Assessment, Diagnosis, Interventions and Support 35 Section 7 – Establishing the diagnosis and breaking the news

7.1 Background to an effective and person-centred approach.

The increased risk of developing dementia at an earlier age is well-established for people with intellectual disabilities, and particularly for people with Down’s syndrome (see Section 2 – Epidemiology). This knowledge raises the ethical dilemma of how this information should be sensitively communicated to the individual and to families and carers. It can be helpful to begin conversations during the transition process, building from people’s current understanding of the aetiology of their intellectual disabilities. Ongoing conversations can explore people’s awareness of health risks that may develop over their lifetime, together with specific risks associated with different syndromes.

The awareness of difference is personally challenging and it is likely that this process will be painful and it will be necessary to give ongoing support.

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