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

There is much work to be done in this area as currently many individuals with intellectual disability have not been informed about the nature of their intellectual disability and any associated health risks. The individual and their network of support need to be given the opportunity to understand how age-related risks can be monitored and identified at the earliest possible stage by regular health screening and the promotion of healthy ageing (see Section 3 Baseline and Monitoring). They also need to be informed of what assessment and interventions, including adaptations, accommodation, support and care, are available if difficulties associated with dementia do develop (see Section 11 – Environments and Section 12 – Interventions).

7.2 Establishing the diagnosis of dementia The first step in establishing the diagnosis is to bring the assessment information from different sources together (see Section 6 – Assessment). It is important for the multidisciplinary group to combine the assessments of the psychiatrist, psychologist, occupational therapist, community nurse, speech and language therapist and other relevant professionals with the results of the investigations and physical examination that the GP or psychiatry team may have carried out. The clinical or other qualified psychologist and psychiatrist will be the key disciplines involved in reviewing the outcome of multidisciplinary assessment and then arriving at a diagnosis, with support from the multidisciplinary team.

7.2.1 Diagnostic process For a significant proportion of individuals, it may not be possible to reach a clear diagnosis at an early stage. It may only be possible to have a range of differential diagnoses with a true picture emerging over a period of time (see Section 4 – Possible Reasons for Decline).

The diagnostic evaluation may need to be repeated regularly, e.g. at six monthly intervals.

It is worthwhile remembering that for some individuals at this stage the diagnosis of dementia may be clearly ruled out and the presenting problems formulated in a different way and appropriate interventions offered.

36 Dementia and People with Intellectual Disabilities Assessment information may need to be referred to regularly or may not need to be referred to again for several years, therefore it is important to ensure copies are securely held where they may be found in future. Some services copy their assessment reports to the GP, the residential home or family carer as well as to the person’s NHS file held within the local service for people with intellectual disabilities. Accessible reports should be considered for the person with intellectual disabilities.

7.3 Sharing the information with the person with intellectual disabilities Consistent with national guidance concerning sharing information about diagnosis of serious illness with the patient, all UK dementia strategies state that everyone should be told their diagnosis and this has been conceptualised as a human right.

A person-centred approach that does not further isolate, depersonalise and marginalise the person means steps should be taken to share the information with the person with intellectual disabilities as early as possible, and at all stages, so that they can be supported to understand and cope with their changing experiences (Watchman, 2012; Tuffrey-Wijne & Watchman, 2014).

This will also help them be involved as much as possible in decisions about their support and care and medical treatments, including concerning establishing their views and preferences about future care before their illness progresses.

Where health professionals from services other than specialist teams for people with intellectual disabilities are in direct communication with the person concerning their diagnosis and illness, they may need support and guidance concerning the communication needs of the person with intellectual disabilities, as generic breaking-bad-news models are not likely to meet their needs.

However, the process of sharing the diagnosis also needs to be sensitive to the expressed wishes of the individual concerning knowledge of their physical health and illness and, as for the general population, it is likely to be painful for the person to hear this information and accept their diagnosis.

However, it must be undertaken as good practice irrespective of the mental capacity of the person concerned so that the person is sensitively given opportunities to know about the health changes they are experiencing and a psychological approach, with additional direct psychological interventions when necessary, should be used to give them emotional support and lessen anxiety and distress.

A wide range of personal factors, including culture, personal history and current relationships, also need to be taken into account when deciding how to share the diagnosis and to facilitate an understanding of the illness and experiences.

The model of best practice concerning breaking the news to people with intellectual disabilities emphasises the need to communicate information over time and based on ‘chunks’ appropriate to the person’s current framework of knowledge and lived experience and their awareness of the future.

All those who know the individual can contribute to a current understanding of the Guidance on their Assessment, Diagnosis, Interventions and Support 37 person’s information needs and preferences and how material can be presented to maximise understanding and retention. This process may involve additional input from a speech and language therapist to make the information as accessible as possible, including when the person no longer communicates verbally. As the illness progresses the person’s framework of knowledge will change and is likely to be related to an earlier period of their life.

Practice guidelines, developed within the multidisciplinary team, concerning how to approach communicating with the person about their dementia and with suggestions about how to personalise this, can be helpful.

In order for the person to have adequate support it will generally be appropriate to share the diagnosis with family, friends, carers and support workers around the time of telling the person themselves.

This is an ongoing process and all involved with the person, whether multidisciplinary professionals, carers in different contexts, and family members, need to feel confident to give accurate and accessible information to the person and to be supported to give this information repeatedly and helpfully in the context of changing information needs. The psychologist and other members of the multidisciplinary team are an important resource that needs to be available to support those in day to day contact with the person about their continuing communications concerning the diagnosis and the person’s changing experiences, whilst still maintaining a positive approach to support. The use of a ‘communication passport’ that incorporates the communication needs linked to the progression of dementia can be very helpful.

Booklets such as The Journey of Life and About Dementia (Dodd et al., 2005 a, & c), and What is Dementia? (Kerr & Innes, 2000) are useful resources for helping the person with intellectual disabilities understand their condition and experience, although it is clear they should always be introduced with sensitivity and care.

7.4 Sharing the information with family and carers This is also a complex process as it will involve giving information on the diagnosis, including likely course and prognosis, and many family members and carers and support workers will understandably find it painful and difficult to be given this information.

In some cases families and carers will have had no prior knowledge of the increased risk of people with intellectual disabilities developing dementia and they will require both emotional support, psycheducation and, where relevant, training. Families can find it devastating to learn that their loved one is developing an impairment additional to their intellectual disability. However, it is very important to help family and carers understand how dementia is affecting the person with a pre-existing intellectual disabilities and to maintain an awareness of both diagnoses so that they can understand and cope with the changing situation.

Families may need a lot of support to accept that the person will intellectual disabilities needs to be told their diagnosis and that not knowing is likely to be linked to increased confusion and distress. Once again a helpful approach needs to be informed by an awareness of how family and carer factors, such as culture, religion and personal history, 38 Dementia and People with Intellectual Disabilities might influence their attitude and understanding of the needs of the person with intellectual disabilities and dementia. On occasion family members may need focused psychological interventions concerning their acceptance of the diagnosis.

A partnership approach needs to be adopted with the person, their family and friends, and their carers. A palliative approach also needs to be adopted from the point of diagnosis and effort should always be made to keep families and carers informed and involved at all stages (see Section 15 – Palliative Care and End of Life). Family and carers are understandably anxious about future care and they need help in planning and thinking ahead including concerning specific supports and accommodation. Their understanding of the support and management plans and the rationale behind them can be increased by their involvement in structured meetings such as those using the Quality Outcome Measure for Individuals with Dementia (see Section 18 – Outcomes).

Families and carers will need support and information to prepare for end of life care at the later stage of illness and they need to be sensitively informed about this early on to minimise their sense of isolation and anxiety about the future.

There are information booklets to assist carers to understand dementia, for example, Keep Talking about Dementia (Watchman, 2006) and Down’s Syndrome and Alzheimer’s Disease: A guide for Parents and Carers (Holland, 2013). Useful information can also be found on the Alzheimer’s Society website.

7.5 Sharing the information with friends and peers Those involved with the person with intellectual disabilities who is affected by dementia also need to inform the friends and peers of the person, who may themselves have intellectual disabilities, about the diagnosis and help them understand what this means.

Friends and peers benefit greatly, both personally and in their capacity to support the person with dementia, from the guided use of specific resources and psychological work or group work aimed at helping them understand what is happening to the person.

There are resources to help friends and peers with intellectual disabilities, e.g. About My Friend (Dodd et al., 2005b), Ann has Dementia (Hollins et al., 2012) and Easy Read Factsheets (BILD, 2014).

7.6 Multidisciplinary discussion and care coordination In the first post-diagnostic multidisciplinary meeting, which wherever possible should include social work practitioners, it is important to agree on the process of care planning at this early stage and identify an appropriate professional to be the care coordinator. This should form part of the Care Pathway and lead into the development of a new Health Action Plan (HAP) and a reviewed person-centred support plan (see Section 10 – Philosophy of Care). The HAP and support plan will need to be reviewed regularly in the context of the person’s changing condition and anticipated needs. The Quality Outcome Measure for Individuals with Dementia is a useful tool to use in this process and can involve family, paid carers and professionals in partnership.

Guidance on their Assessment, Diagnosis, Interventions and Support 39

7.7 Management Irrespective of the degree of certainty attached to the diagnosis, interventions focused on the needs of the individual and management of any risks should be thoroughly discussed in the first care planning meeting. All interventions and management plans need to have the person as the centre of focus and this will therefore require a holistic approach that takes into account the person’s expressed views and a wide range of personal factors, including profile of abilities and communication needs, cultural background, life experiences, significant relationships with family, carers and peers, and preferred activities, as well as working to minimise known risks.

Decisions about specific interventions and treatments that are likely to be effective in supporting the person to live well, maintain independence and minimise disabilities, need to be discussed and reviewed in regular multidisciplinary meetings. The frequency of such meetings will vary depending on the current needs of the person, and are likely to range from monthly to six monthly.

Please refer to other relevant sections of guidance for details of evidenced-based interventions and treatment currently available.

As the person’s physical care needs intensify and they approach the later stage of dementia, the team of professionals around the person needs to consider NHS Continuing Care Funding. In addition there will be an increasing need for palliative care and end of life planning (see Section 15 – Palliative Care and End of Life).

Key points People with intellectual disabilities, their families and carers need to be given I opportunities to understand the nature of the intellectual disability and information about any associated health risks from an early point in their life and particularly from transition to adulthood onwards.

People with intellectual disabilities need to be told about their diagnosis of I dementia and given ongoing opportunities to understand their diagnosis and their experience of dementia.

Family members and carers need to be informed about the diagnosis and involved I as much as possible in support and management plans and, as appropriate, be given opportunities for education and training.

The person’s peers and friends are also important people to involve in giving I information about the diagnosis and this will both help them cope and help them support the person affected by dementia.

People with intellectual disabilities and their families and carers may need I psychological interventions to enable them to feel emotionally supported and to begin to understand the diagnosis.