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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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Staff need to understand what is dementia, its specific links to people with intellectual disabilities, and the signs of symptoms that they need to recognise both at pre-diagnosis and at each stage of the disease. However, this needs to be underpinned by a model of dementia that helps them to really understand what is happening to the person who they are supporting who is developing dementia, and to be able to put themselves in that person’s shoes (see Section 9).

17.4 Training content Training should use a variety of mediums, e.g. didactic; group work; use of DVDs;

discussions; role plays; case studies; homework tasks. Training can be supplemented by the use of specific resources e.g. the Dementia Workbook for Staff (Dodd et al., 2006), Resource Pack for Carers of Adults with Down’s Syndrome and Dementia (Dodd et al., 2009), Supporting Derek (Watchman et al 2010), Happy Eating (Dodd, 2012).

Table 6 suggests types of training, support and outcomes that should be achieved for each stage of dementia (Dodd 2014). Each stage builds on the information and supports from previous stages and knowledge and ideas can be re-iterated and developed with the staff team. For further details of the Outcomes required, see the chapter on outcomes later in this guidance.

17.5 Working with other residents The effect on other people with intellectual disabilities of seeing a peer deteriorate is rarely considered. Helping peers to understand dementia can reduce their distress and help them to be more considerate and understanding of the changes occurring with the person with dementia, in some cases helping to prevent placements breaking down.

Resources now exist to help explain dementia to adults with intellectual disabilities. Dodd et al.,(2005 a,b & c) published three booklets, About Dementia, About My Friend and The Journey of Life, to support this aspect of work. These booklets explain dementia in terms of the lifecycle. They can be used individually or in a group setting, as long as supported by confident staff/carers. Both Lyngaard and Alexander (2004) and Dodd (2008) have reported on successful short courses for people with intellectual disabilities living with someone with dementia.

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Guidance on their Assessment, Diagnosis, Interventions and Support 89

17.6 Ethnicity Issues Ethnic background has been shown to affect the nature of care giving practices, carer stress and help seeking in people with dementia and their carers (Iliffe & Manthorpe, 2004). In people with intellectual disabilities in general there are significant differences in the nature of care giving, carer stress and carers’ psychological and physical burden (McGrother et al., 2002, Devapriam et al., 2008). Contrary to the popular view, very few enjoy the support of extended family networks (Hatton et al., 2002). Material disadvantage, lack of informal networks and high need for services are some of the key issues related to people with intellectual disabilities from an ethnic minority background (Hatton et al., 1998).

However, it is not clear how these processes are affected when an individual with intellectual disabilities from an ethnic minority background develops dementia. Clinical experience suggests that the lack of availability of culturally appropriate respite and home care provision cause difficulty. Lack of awareness of services and language barriers may prevent people from ethnic minority communities from receiving appropriate levels of support. This can result in significant distress for both the person with intellectual disabilities and their carers.

This highlights the need for more cohesive action by health, social care and voluntary sector services together to improve access to and the experience of services by people with intellectual disabilities and dementia from black and minority ethnic (BME) communities.

The plan of action should include the following:

A clear strategy for staff training on diversity.

I Proactive measures to develop partnerships with community and voluntary I organisations.

Facilitation of active participation by people with intellectual disabilities and carers I from BME background in the stakeholder discussions about the development of culturally appropriate services for people with intellectual disabilities and dementia.

Direct payments and individualised budgets may provide an opportunity for I increasing the range of culturally appropriate services available.

Further research is required to understand the views of people with intellectual I disabilities with dementia from BME communities and their carers about culturally appropriate way of meeting their needs.

Key points Staff are key to ensuring that people with intellectual disabilities and dementia can I ‘live well’ with the disease.

Training must include developing a shared vision on which to build practice – this I can only be achieved by training the whole staff team together.

Training is not a ‘one-off’ activity, but should be delivered on an ongoing basis as I the person’s dementia progresses to ensure that staff are capable of meeting the person’s changing needs and achieving the best outcomes for the person.

Capable dementia services need to be aware of, and meet the needs of, the person I with dementia, those of staff and carers and other people with intellectual disabilities who live with the person, including those from BME communities.

90 Dementia and People with Intellectual DisabilitiesSection 18 – Outcomes

There are a range of quality standard documents which have been produced by different nations to define the expected standards of care for people with dementia.

The National Institute for Health and Care Excellence (NICE) has produced two quality standards (QS1, NICE, 2010; QS30, NICE, 2013) which define what constitutes a high standard of care for people with dementia for people in England and Wales.

NICE dementia quality standard QS1 (NICE, 2010) covers care provided by health and social care staff in direct contact with people with dementia in hospital, community, homebased, group care, residential or specialist care settings. This quality standard requires that dementia services should be commissioned from and coordinated across all relevant agencies encompassing the whole dementia care pathway. It states that an integrated approach to provision of services is fundamental to the delivery of high quality care to people with dementia. According to NICE (2010), this quality standard provides clinicians, managers and service users with a description of what a high-quality dementia service should look like. It describes markers of high-quality, cost effective care that, when delivered collectively, should contribute to improving the effectiveness, safety, experience and care for adults with dementia NICE dementia quality standard QS30 (NICE, 2013) covers supporting people to live well with dementia. This set of standards applies to all social care settings and services working with and caring for people with dementia.

Unfortunately both these quality standards have been written as inputs rather than outcomes, and the measures for assessing compliance with these quality standards are purely quantitative in nature and that desired levels of achievement should be defined locally.

18.1 Measuring outcomes for services for people with intellectual disabilities and dementia In our original guidance on dementia (BPS, 2009) a self-assessment checklist with 15 standards was developed that can be used to evaluate the provision of dementia care across health, social care and voluntary agencies in a geographical area. Many areas have used this as a basis of developing their local dementia strategy for people with intellectual disabilities and to benchmark their services and develop an action plan (e.g. Surrey Learning Disabilities & Dementia Strategy, 2011).

The self-assessment checklist took a similar approach to that in the ‘Green Light toolkit’ (Cole & Gregory, 2004) and Challenging Behaviour: a unified approach (Royal College of Psychiatrists et al., 2007). The checklist reflected the content of the report, and translates the guidance into ‘Standards you should see if the recommendations are being met’.

However, it differs from previous quality standards in that each standard is written as an outcome rather than an input. The self assessment checklist has been updated and can be found in Appendix 1. Each standard should be rated using a red–amber–green system, with clear descriptors given for each of these for every standard.

Guidance on their Assessment, Diagnosis, Interventions and Support 91

18.2 Measuring outcomes for people with intellectual disabilities and dementia Outcome measurement for people with intellectual disabilities and dementia is still in its infancy. Clinicians and professionals working with people with intellectual disabilities are often clear about what works, but this has not resulted in a substantial evidence base.

Specific areas have been looked at for groups of individuals, e.g. effectiveness of staff training, type of living establishment, use of personalised technology.

Within the general population of people with dementia, a range of measures have been developed and evaluated, but many instruments are not sensitive enough to detect change.

However, it is clear from the literature that current measures see dementia as a ‘stable’ disease rather than one which is progressive. It seems vital that any measure is sensitive to the progression of the disease and not just for people with early or mid stage dementia.

One of the key components of excellence in dementia care is the ability of the system around the person with dementia to continuously adapt their understanding, care and resources as the person’s dementia progresses. Staff who work in homes and day services for people with intellectual disabilities usually receive training as people are identified as having dementia. This allows them to become proficient at meeting the needs of people at the newly diagnosed/early stage. However, as the dementia progresses they are less able to adapt what they do in line with the person’s changing needs. This often leads to staff feeling that they cannot care for the person with changing needs and that they are always ‘lagging behind’. In turn, this can lead to poorer outcomes for the person with mid or late stage dementia.

Outcome measurement needs to relate to the stages of dementia and how the care for the person is adapted as the disease progresses. It also needs to focus on outcomes for the person and not for processes.

The Quality Outcome Measure for Individuals with Dementia (Dodd & Bush, 2013; Dodd et al.,

2015) has been developed from the BPS /RCPysch guidance (BPS, 2009). The measure has 17 domains. Each domain has a description of the required quality outcome for each of the three main stages of dementia – suspected/early, mid and late stage. The measure can be found in Appendix 3.

The QOMID should be completed by the professional in discussion with the relevant people for the particular stage of dementia that the person has. Wherever possible, and depending on ability, the person with dementia should be asked how they would rate their experience in each domain. Additional information for the professional to make an inclusive judgement may come from family, support staff, advocates, care managers or anyone else involved with the person and their support, often at a care review meeting.

In supporting the person with dementia, the aim is for them to have high quality outcomes throughout the progression of their dementia. As dementia is a progressive condition, it is vital to ensure that the person’s changing needs are recognised and met. This may mean that scores may fluctuate during the course of the dementia as support ‘catches up’ with the person’s changing needs.

The QOMID is also designed to help everyone involved supporting the person to work with 92 Dementia and People with Intellectual Disabilities the person and their carers to both prevent deterioration in quality outcome and to forward plan effective care. For each domain that is scored at less than the maximum, the support team is asked to specify what needs to be put in place to improve the person’s quality outcome for that domain. These actions can then be included in the person’s support plan. In addition, by looking at the descriptions for the next stage of dementia, the professional can begin to help the person and their supporters to think about what needs to be put in place to maintain the person’s quality outcome.

Case Study Brian was diagnosed with dementia. The clinical psychologist and occupational therapist met with the staff team and care manager. The QOMID was used to evaluate his quality outcome. The results were used to create a dementia care plan based on the interventions described in this guidance. This provided a clear overview of who was doing what in relation to Brian’s support needs, e.g. the occupational therapist to source further equipment, the training that was needed, and the need for the community incontinence service to be involved.

Regular reviews ensured that everyone was aware of any changes in Brian. It was hoped that this would reduce the need for crisis intervention. The home manager reported the reviews as helpful as they often did not notice deterioration until they had space to reflect, as they were with the person daily. It also meant better quality care for Brian as all those involved in his care were accountable for certain outcomes. The home manager felt that they were better supported by the community intellectual disabilities team whereas previously they felt that they had been left to struggle until a crisis occurred.

Key points Each area should use the Self-Assessment Checklist to measure the Outcome of I their services for people with intellectual disabilities and dementia, and to assist in the development of a local strategy document.

Individual quality outcomes for each person with intellectual disabilities and I dementia can be measured using the Quality Outcome Measure for Individuals with Dementia (QOMID).

Guidance on their Assessment, Diagnosis, Interventions and Support 93 Section 19 – Future directions and research

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