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?