CHALLENGING BEHAVIOUR AND END OF LIFE CARE GARY O’DOHERTY LISA CARLIN CHALLENGING BEHAVIOUR SERVICE – NORTHERN SECTOR Western Health and Social Care Trust CHALLENGING BEHAVIOUR SERVICE (Northern Sector) • 2 Nurses + 1 Consultant Psychologist • Supported by Consultant Psychiatrist & CMHT • Our aim is to work with staff in nursing and residential homes to identify and manage challenging behaviours. • Due to the nature of Dementia the Challenging Behaviour Operational Guidelines (2011) have highlighted a need to treat people with dementia in the community rather than a hospital setting. We want to keep people where they are and prevent ‘inappropriate’ admissions to assessment wards, i.e. caused by pain and infection. • The face of dementia care will be changing dramatically over the next few years and nursing/ residential homes will be expected to take a more proactive role in maintaining their residents where they are (Familiar surroundings and familiar faces). • Our assessment consists of a 14 week process. During that time we collect information from staff, family, GP and notes. We carry out observations of the behaviours where possible and based on this we create a formulation and intervention strategy with staff in the home. What is challenging behaviour? • It is widely recognised that most challenging behaviour in Dementia is an attempt at communicating an ‘unmet need’ • The person may be in pain or discomfort, grieving for a deceased relative, frightened by a strange environment or angry at something said or done • “We can no longer assert that when cognitive functioning fails us, all that is left is our physical self. We must attend to the psychological needs of people with Dementia if we want to improve their well being.” (Graham Stokes) CAUSES OF CHALLENGING BEHAVIOUR • • • • • • • • • • • • • PAIN INFECTION COMMUNICATION DIFFICULTIES/UNDERSTANDING STAFF ATTITUDE MOOD LOSS OF INDEPENDENCE/ TRYING TO MAINTAIN INDEPENDENCE PRE-EXISTING MEDICAL CONDITIONS I.E DIABETIES MEDICATION LACK OF CHOICE PERSONALITY FEAR ANGER PALLIATIVE NEEDS Demography There are 800,000 people in the UK with a form of dementia (2012) There are over 17,000 people under 65 in the UK with dementia (2012) 1 in 14 people over 65 years of age and 1 in 6 people over 80 years of age have a form of dementia (2012) In Northern Ireland it is estimated 18, 286 people have dementia (2011) Prevalence Rates: 40-64 years 65-69 years 70 – 79 years 80+ years 1 in 1400 1 in 100 1 in 25 1 in 6 (Figures taken from the Alzheimer's society website: alzheimers.org.uk) END OF LIFE CARE IN DEMENTIA End of life care issues for people with advanced dementia have only been recently addressed in guidance. Recent policies include: National Service Framework for older people (2001) NHS End of Life Care Programme (2005) Transforming your care strategy (2012) NICE Guidelines. Dementia - Supporting People with Dementia and their Carers in Health and Social Care (2006) DHSPSS Dying Matters (2010) Gold Standards Framework (GSF) (2003) Liverpool Care Pathway DHSPSS Improving Dementia services in Northern Ireland (2011) Barriers to providing palliative care in dementia Dementia is not recognised as a terminal disease. There are difficulties in prognostication and recognising when a person reaches the point of palliative care. Problems in understanding what the person is trying to communicate can impact on symptom management. A lack of skills and knowledge in providers of care regarding palliative care for those with advanced dementia and a lack of access to specialist palliative care consultation. A lack of education about the complications of advanced dementia and limits to treatment options resulting in increased hospital admissions and aggressive treatments. A lack of the use of advanced care planning for dementia patients. Advanced dementia – Signs and Symptoms When does a person with dementia stop living with dementia and start dying from it? • Dependence – ADL’S • Communication – Unrecognisable/single words • Mobility – Unable to walk/weight bear/loss of sitting posture and head/neck control • Development of contractures/muscle rigidity/de-conditioning • Loss of ability to recognise food/self feed/swallow • Bowl and bladder incontinence • Inability to recognise self and others CARE ISSUES • Communication • Pain • Swallowing/eating and drinking – comfort feeding? Artificial nutrition and hydration? • Infection – Assessment and treatment (Delirium) • Depression • Spiritual needs • Psychological needs • Family/caregiver needs BEHAVIOUAL STAGING MODEL Behavioural Staging Model Communication Stage 4 End Stage Withdrawal Appears withdrawn like going in and out of hibernation. Eyes often closed as of sleeping, little movement or vocalisation. Still responds to positive stimulation i.e. touch, nurturing voice tones, music. May stare intensely at things that catch their (usually visual) attention. May laugh at slapstick-type humorous events that they see. Communicate and stimulate person through their senses, as much as possible (i.e., letting her smell her favourite perfume on a handkerchief rolled into her hand, feeding him favourite flavours of yogurt, giving her hand massages, playing familiar music CDs, singing to him, reading him well known poems and prayers, bringing her flowers, and wearing bright clothes so that person can see you). Provide as much movement as possible (passive range of motion, hand tapping to music). Provide as much other sensory stimulation as possible (applying perfume, massage, singing, music, and their favourite foods). Sensory stimulation – touch, nurturing voice tones, tapping rhythmically to music, hand massage. Familiar nice sounds. People who are under-stimulated in stage 3 may appear to be in stage 4. The quality of the eye movement, whether attempts are made to follow movement of people around, can be useful in determining whether the person is at stage 3 or 4. Use both their first name and surname when addressing them (for women use their Maiden name). Assessment Tools • Infection (Bloods & MSSU) – Often triggers of ‘Unusual / Challenging Behaviour’. • Abbey Pain scale • ABC (Antecedent Behavioural Chart) • Cornell Depression Scale • SASBA (St Andrews Sexual Behaviour Assessment) • MUST (Malnutrition Universal Screening Tool) • Bowel Charts • Food/Fluid (input/output) •QUESTIONS?