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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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People will deteriorate at different rates and patterns. Some deteriorate steadily, others less predictably, and this can change at any time. Furthermore, people will often not be clearly in one stage and will show signs of more than one stage.

Frequently people offering care and support on a daily basis to a person with dementia adapt to the changes in the person as they occur. It is often when the person is assisted to have a holiday and is out of their familiar environment that staff and carers realise the extent of the change. Similarly, if staff are new to caring for the person, they might not know the person’s history and not understand the abilities of the person before they were diagnosed with dementia.

Guidance on their Assessment, Diagnosis, Interventions and Support 51 Case Study John has Down’s syndrome and Alzheimer’s disease. He resides in a supported living home with a staff team that have known him for many years and have learnt to support him effectively. The staff team has been supported through ‘whole staff team’ training and regular reviews of John’s care needs.

The psychologist was contacted as the psychiatrist raised concerns that the staff team was beginning to struggle with understanding John’s needs, and that he was losing weight.

The psychologist offered a consultation session to the manager and senior support workers.

As a result of the consultation, it became apparent that staff who regularly supported John had not recognised that John’s dementia had progressed. This meant that the style of support and prompts that they used were no longer helpful for John and not appropriate for his current needs. Once this was clarified, the team was able to reflect on John’s changing needs and put in place a more appropriate care plan to support him effectively, especially with regard to his eating and drinking. This led to John gaining weight.

Key points The social model gives a conceptual model for staff and carers to understand I dementia.

Understanding what happens as dementia progresses and its consequences gives a I framework to understand and respond appropriately.

Think about what the person is actually experiencing, and use that to inform the I care and support that is required.

52 Dementia and People with Intellectual Disabilities Section 10 – Philosophy of care

10.1 Individualised philosophy of care There are a number of models of person-centred dementia care in existence within the general dementia literature, including Person-Centred Care (Kitwood, 1997); VIPs (Brooker, 2006); and Feelings Matter Most (Sheard, 2008). Sheard (2013) has recently introduced the concept of ‘mattering’ which he says ‘brings together the core elements of;

emotional care, skills, quality of life and environment with the culture of a shared relaxed community, thereby evidencing that individuals matter’.

The State of Care report from the Care Quality Commission (2014) showed that those services that maintain people’s dignity and treat them with respect all have a number of things in common: they recognise the individuality of each person in their care, help the person to retain their sense of identity and self-worth; take time to listen to what people say; are alert to people’s emotional needs as much as their physical needs and give the person control over their care and the environment around them.

Excellence in dementia care requires staff and family carers to understand and know the person, understand dementia and its consequences for the person, and consequently to be able to think ahead and predict ‘stressors’. They need to adapt their approach as much as possible to ensure that the person with dementia has a stress-free, failure-free but individualised care that is consistent but without time pressures. This needs to be incorporated into the person’s person-centred plan and care plan.

10.2 Life Story work This can only be achieved by having a thorough knowledge and understanding of the person and their history. This can be aided by the use of Life Story work (Gibson, 1994).

The individual themselves should be encouraged to participate in the making of the life story as much as possible.

Where possible the individual should have the final say as to what is included in the I book/box. People should only put things in their life story book that they are comfortable with – even if it means leaving out huge chunks of their life.

A Life Story does not have to stick to one particular format – it should be whatever I the person wants it to be. It can include sensory items that people can feel or smell which have a significance to the person.

Life story books/boxes should not finish. Staff, family and the individual can I continually add to them.

Life Story work can be a great way to increase an individual’s self-esteem because the I life story is all about them and what they like, etc. (without having to mention a diagnosis or any other labels they may have.) Guidance on their Assessment, Diagnosis, Interventions and Support 53 If including photographs of people it is important they are put into some sort of I context, for example, what their name is, how they are known to the person, date taken, event, why it is important to the person. That way, anyone can pick the book up and be able to use it in a meaningful way with the individual. This is absolutely vital so that if someone loses the ability to remember, the staff still have the cues.

If the person does not have many pictures of their life/growing up, an alternative I would be to use pictures from magazines, books and the internet of anything that the individual remembers or just likes.

Staff and family carers need to be clear about what they are trying to achieve. This is not the time for learning new skills, achieving goals or facing change. They need to consider the person’s happiness, comfort and security. The focus of care should change from goal orientated to emphasis on enabling quality of life. Staff and carers need to remember that people compensate for their deterioration in functioning by making greater use of remaining abilities (e.g. earlier memories). This may mean that the person finds comfort in activities and objects from their childhood. Roll-back memory may also mean that the person is not oriented to the present day. Care needs to be taken not to challenge the person’s beliefs repeatedly as this will add to their stress. This approach fits with the values and model of Positive Behaviour Support (Gore et al., 2013) that is central to services for people with intellectual disabilities.

Care includes not only the social aspects of the person’s life, but an increasing awareness of the physical consequences of getting older and additionally having dementia. Care needs to be taken to ensure that diagnostic overshadowing does not occur, where all changes are attributed to the dementia. Research (e.g. Kerr et al., 2006) indicates that pain recognition and management is extremely inadequate in this group of people. All people should have comprehensive health checks and a Health Action Plan, updated annually at minimum.

Further information on health co-morbidities associated with dementia can be found in Section 8.

54 Dementia and People with Intellectual Disabilities Dementia Consultation Mary, a lady with Down’s syndrome, was diagnosed with mid stage dementia. The home manager was worried about how the staff team would manage the diagnosis and also change their working practices. She was concerned that they would feel de-skilled.

A systemic staff consultation was held, exploring the meaning and beliefs that support staff had about dementia, and how support needs changed with the diagnosis. They highlighted the change in emphasis from valuing independence and choice to maintaining skills and reducing anxiety. Different perspectives of ‘good support’ were considered, for example: the organisation, intellectual disability team, client, client’s family, home manager, and support team. They discussed the how organisational values were different to what they now felt might be best for Mary.

Personal stories of dementia, death, what might make a ‘good death,’ were explored and the confusion of being a professional in someone’s life and expectations around this, yet knowing someone and being sad about the changes in the person they supported. We talked about space that can be made for all of this. The home manager noticed changes in the way staff communicated with each other about their emotions as well as the practical issues. She noticed that staff seemed more confident and creative in changing their practice to suit Mary. For example, the staff team asked for training in intensive interaction so they would be better able to communicate with Mary as she could no longer speak. Mary was able to stay at home until she died.

Key points Staff and carers need to ensure that people with intellectual disabilities and I dementia have stress-free, failure free and consistent care.

This approach leads to a more supportive environment and lower levels of I behaviour and distress.

Services need to review regularly the support given to people with intellectual I disabilities and dementia, particularly the amount of staff support provided both during the day and through the night.

–  –  –

This section of the guidance focuses on how carers and services can create capable environments that enhance the quality of life for people with intellectual disabilities and dementia.

11.1 Where should people with intellectual disabilities and dementia live?

Janicki and Dalton (1998) proposed a potential pathway that someone might follow after a diagnosis of dementia. This we have adapted to reflect the current position of the Care Services Improvement Partnership and the Department of Health, with the options given in order of preference for people with intellectual disabilities and dementia.

Preferred option:

‘Dying in place’ where the person can stay where they are currently living with appropriate supports adapted and provided. This means that the person stays with what is familiar in their long-term memory.

Compromise option:

‘Moving to more specialist intellectual disability provision’ where the person has had to move from their current home, but moves into provision supported by intellectual disabilities services.

Least preferred option:

‘Referral out of intellectual disability services’ where the person will be moved to services for older people, either residential or nursing.

By staying where they are, the person will stay with familiar people (family, peers, familiar carers) and in an environment that they know. Although their needs will change as the dementia progresses, every effort should be made to maintain their home life. This may necessitate environmental changes and adaptations to support the person, increases in staffing levels and careful thinking about the supports required.

In some instances it is not possible to maintain the person in their existing home:

It may be that the design of the building is inappropriate and cannot be changed.

I The person may be being looked after by older family carers who may not be able to I continue caring as the needs of the person increase, or their own health changes.

Risk assessments should be completed regularly to ensure that the environment I remains safe for both the person and their carers.

Staff may reach a ‘tipping point’, where there are insurmountable problems with the I placement (often the quality of life for the other residents or staff issues).

Funding may be an issue.

I If the person has to move then the most appropriate provision may be a specialised intellectual disability service which is able to meet the person’s increasing health needs and provide palliative care (Thompson & Wright, 2001). Although some moves may be of 56 Dementia and People with Intellectual Disabilities benefit to the person, the majority of the evidence suggests that moving increases the rate of decline and can precipitate deterioration in health and behaviour and lead to an earlier than expected death (Wilkinson et al., 2004). Multiple moves must always be avoided. The use of an advocate or an Independent Mental Capacity Advocate (if the person has no family) may assist in decision-making, particularly where the person is lacking capacity (Mental Capacity Act, 2005). Relationships with significant others e.g. families, staff, friends and advocates must be considered and maintained.

If the person has to move, it is vital that other opportunities for continuity, for example, day activities, leisure and social opportunities which are in the person’s long-term memory, are maintained. Maintaining social networks will also involve working with the person’s peers to help them understand dementia and the changes in the person. This is discussed further in Section 17. There is a range of materials to assist with this (Dodd et al., 2005a, b & c).

11.2 What are the features of a capable environment?

There is a wealth of literature within general dementia care, and a smaller amount within the intellectual disabilities arena about the importance of the environment in enabling the person with dementia (Watchman et al., 2010; Kerr, 1997, 2007; Dodd et al., 2009; Dodd et al., 2006). Most environments where people with intellectual disabilities live are not ‘dementia-enabled’.

According to Marshall (1998) the environmental design should not impede an individual but should have positive and beneficial effects for both the person and the staff. The

environment should:

– compensate for the disability;

– maximise independence;

– enhance self-esteem and confidence;

– demonstrate care for staff;

– be orientating and understandable;

– reinforce personal identity;

– welcome relatives and the local community; and – allow control of stimuli.

Adaptations will need to be made to ensure that the environment does not add more stress. Many of the adaptations required are not too expensive but can have a very positive effect on the quality of life for the person with dementia.

Environments need to be:


I Predictable and make sense.

I Familiar.

I Suitably stimulating.

I Safe and risk assessed.

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