1. CHALLENGING BEHAVIOUR AND END OF LIFE CARE
GARY O’DOHERTY
LISA CARLIN
CHALLENGING BEHAVIOUR SERVICE – NORTHERN SECTOR
Western Health and Social Care Trust

2. 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.

3. 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)

4. 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

5. 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 1 in 1400
65-69 years 1 in 100
70 – 79 years 1 in 25
80+ years 1 in 6
(Figures taken from the Alzheimer's society website: alzheimers.org.uk)

6. 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)

7. 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.

8. 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

9. 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

10. BEHAVIOUAL STAGING MODEL

11. 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)

12. QUESTIONS?