Quality in Practice (Winterbourne) Event 20/09/2013

1. Quality in Practice (Winterbourne) Event20/09/2013 Dignity in Dementia Care Denise J Mackey Derbyshire County Council Learning and Development Adult Care

2. In relation to people with a dementia: Recognition that supporting people with what could be described as behaviour that challenges is not easy, developing the right services and building up expertise is a complex task. However, there is clear evidence and guidance on what works. There are no excuses for continuing to commission the wrong model of care. People whose behaviour challenges has tended to refer to people with learning or intellectual disabilities, including those people who have autism, who display challenging behaviour. However there are a number of other groups of people that may also be described as so, people with a dementia, and people with severe mental health problems. • No longer tolerating people placed in inappropriate care settings. • A culture and a way of working that actively challenges poor practice and promotes compassionate care.

3. What is ‘challenging behaviour’? On separate post it notes write down behaviours that you find either: • Difficult to understand • Difficult to support a person that is using them • Difficult to deal with on a personal level Remember a behaviour is something that others can see or hear !

4. How we can define‘challenging behaviour’. ‘ Culturally abnormal behaviour of such an intensity, frequency or duration that the physical safety of the person or others is likely to be places in serious jeopardy, or behavior which is likely to seriously limit the use of, or result in the person being denied access to, ordinary community facilities’. (Emerson 1995) ‘Behaviour can be described as challenging when it is of such an intensity frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion’. (Royal College of Psychiatrists, British Psychological Society and Royal College of Speech and Language Therapists. 2007)

5. So, who uses challenging behaviour? Challenging behaviour is most often exhibited by people with developmental disabilities, dementia, psychosis and by children, although such behaviours can be displayed by any person.

6. The facts: • 750,000 people with dementia in the UK, approximately one third live in care homes. • People will experience a range of symptoms, some can affect their behaviour. • More than 90% of people will experience BPSD as part of their illness. • Two thirds of people living in care homes are experiencing these symptoms. • Around one quarter of people in care homes are on an antipsychotic drug. • These have potentially serious adverse effects.

7. The effects of a dementia Will for many people: • Have damaged their short term memory. • Be finding verbal communication more difficult. • Make it harder to retrieve more recent memories. • Make them unable to process a lot of information or follow a logical explanation. • Mean that they misinterpret some visual information. • Mean that they may make unwise choices • Mean that the rely more on emotional memories or memories from long ago, how does this situation make me feel, or who does this person remind me of?

8. Understanding distressed behaviour, (behavioural and psychological symptoms of dementia) • It is important to recognise that BPSD are not ‘bad behaviours’ on the part of the person. These are symptoms caused by chemical changes in the brain which are out of their control. • Behaviour rarely occurs in isolation and is affected by social and physical environments and people’s wellbeing. • The purpose of our behaviour is to get our needs met, it may communicate something about a person’s unmet needs. • In general behaviour will serve a useful purpose within the environment in which it occurs. • Simple adjustments to social interactions and the environment can make a difference.

9. In order to be effective and caring when responding to behaviour we find difficult to understand, it is helpful if we know as much as possible about the person and their history. • Think about distressed behaviour as way of adapting to unfamiliar or confusing situations. • We all have attitudes, values and beliefs that can affect our perception of what is deemed as challenging behaviour. The uniqueness of the individual must be valued and respected at all times. • Challenging behaviour can ultimately affect a person’s quality of life.

10. NICE and SCIE Guidance: • People with a dementia who develop non-cognitive symptoms that cause them significant distress or who develop behaviour that challenges should be offered an assessment at an early opportunity to establish the likely factors that may generate, aggravate or improve such behaviour. The assessment should be comprehensive and include: • The person’s physical health • Depression • Possible undetected pain or discomfort • Side effects of medication • Individual biography, including religious beliefs and spiritual and cultural identity

11. Continued: • Psychosocial • Physical environment factors • Behavioural and functional analysis conducted by people with specific skills, in conjunction with carers and care workers. • Individually tailored care plans that help carers and staff address the behaviour that challenges should be developed, recorded in the notes and reviewed regularly. The frequency of the review should be agreed by the cares and staff involved and written in the notes.

12. Key principles in supporting people with distressed behaviour. • Knowing as much as we can about the person, often the clue to why they are acting in a certain way is in the past. • Analysing the purpose of people’s behaviour. • Good care planning and behaviour support planning and implementation. • Having a range of alternative strategies and therapies so that inappropriate anti-psychotic medication can be stopped. • Not responding reactively to situations, understanding the impact of internal and external antecedents. • Joined up services. • Appropriate training and support for staff. • Good leadership and management.