Download End of Life Care Presentation (DITS)

Presentation from Dementia
Intensive Treatment Service
(Shackleton Acute Assessment Unit)
Team Introduction:
Mike Cormason RMN N/P
Becci Richards RMN
Sarah Edward RNMH
Sue Buckland Support Worker
Mrs Betty Trickett
Outline of the Day
1.
Brief overview of dementia and BPSD
Mike Cormason RMN N/P
2.
Overview of End of Life Care of people with Dementia
Becci Richards RMN
3.
The Reality and Vision
4.
Reflective Practice at Shackleton Sarah Edward RNMH
5.
Family Perspective
Sue Buckland support worker
Mrs Betty Trickett
What is Dementia?
Types of Dementia
• Alzheimer’s
• Vascular (multi-infarct)
• Lewy Body
• Fronto-temporal
Clinical Features of Alzheimer’s Disease
• Cognitive decline





Memory loss
Aphasia
Apraxia
Agnosia
Executive function difficulties
• Behavioural Signs
 Mood swings
 Agitation
 Wandering
• Insidious onset
• Functional Impairment
 IADL
 ADL
• No gait difficulties
Clinical features of AD
Severe stage of AD (MMSE <10)
IMPAIRMENT
Cognition
• Attention
• Difficulty
performing
familiar
activities
(apraxis)
• Language
(phrases,
mutism)
Function
• Basic ADLs
- Dressing
- Bathing
- Eating
- Continence
- Walking
- Decline in
motor skills
Behaviour
• Agitation
- Verbal
- Physical
• Insomnia
DEMENTIA
People with Dementia may present with
different behaviours, these will vary
according to the type of Dementia that
they have and the parts of the brain
affected
Behavioural Changes
Behaviour becomes more challenging
Difficulties in:
 Remembering
 Reasoning
 Communication
Dementia
•
•
•
•
•
Restlessness
Disinhibition
Resistiveness
Sleep Disturbance
Associated Psychiatric conditions
Management Challenges
 Misinterpreting information
 Perceiving personal care as an assault
 Calling out
 Wandering with perceived purpose
 Inquisitive behaviour
The role of the primary care
physician in severe AD
 Help caregivers discover and optimize the
patient’s preserved function
 Monitor and treat complications
 Facilitate caregiver support (respite and day
care programs)
 Be aware of caregiver burden and stress
 Plan hospital admission if needed
 Assist with end-of-life decisions
What is it like to have dementia?
Varies from person to person.
WHO AM I ?
Client 1
Client 2
Born February 6th 1911
Born March 10th 1930
Lived until the age of 93
Lived until the age of 74
Died of pneumonia
Died of pneumonia
Diagnosed AD in 1994
Diagnosed AD in 1994
At the time of diagnosis said “I
feel fine”
At the time of diagnosis denied
any problems with memory.
• Wore a hearing aid in one
ear then both ears in 1983
using an advanced technical
aid.
• Had a broken hip in 2001
with a brief stay in a private
clinic
• Worked as a radio
broadcaster initially
• Concerned for his family for
the painful experience that
they would go through
• Loved by millions but not all,
as a film star and with his
controversial policies
• 40th president of the United
States The most powerful
man in the world
• Sensory impairment in eyes
and ears using NHS aids
• Suffered a broken hip in
2004 with complications
affecting physical and
mental state
• Worked in C & A as a sales
assistant
• No family
• Isolated and lonely
• An elderly lady living in
Lake, Isle of Wight on her
own.
The link between Ronald Reagan and
Miss C is ALZHEIMERS DISEASE…….
Arguably the most powerful man in the world, who
took time, and troubles to write personally to Miss
C whose hobby, was to write to famous people.
He sent his love and offered comfort and support
for her, in his, and Nancy’s prayers.
The Facts
• At present time 820,000 people diagnosed with dementia
in Great Britain (Dementia 2010)
• At least 15,000 people under age of 65 have been
diagnosed with dementia (DOH 2009)
• The Isle of Wight is in the highest 6% of Trusts for
prevalence of Dementia
• Projection for the Isle of Wight concludes prevalence of
dementia will increase to 3,620 people by 2021 an
increase of 40%. (Alzheimers Society)
And Finally
• Dementia costs the NHS £23 billion per
year
• More than cancer and heart disease
combined
• Dementia research receives 12 x less
support than cancer research
Alzheimer's Research Trust 2010
End of Life Care and Dementia
• Almost 60% of people with dementia die in
care homes compare with 32% in hospital.
• 70% suffer from dementia.
• Dementia is not recognised as a terminal
condition.
End of Life care in advance dementia project 2012.
Sharing Knowledge and Skills
• Sharing knowledge between palliative care
specialists and dementia care specialists
is vital
• Effective Outreach and liaison work
• Help to reduce unnecessary moves
Symptoms
• Loss of appetite
• Low mood
• Pain
• Urinary incontinence
• Mental confusion
People in the final stages of dementia have
a greater need for assistance over a longer
period of time than those with cancer.
(McCarthy Met al, 1997)
Communication
• Communication problems hinder the
identification of:
* Hunger
* Thirst
* Pain
* Concurrent illnesses
PAIN
Dementia does not necessarily cause acute
physical pain in the same way as other
diseases, but people in the late stages of
dementia do report feeling pain.
(McCarthy 1997)
Pain
The soothing properties of:
* Touch
* Music
* Massage
* Fragrance
* A loving voice
Pain
• Staying calm and attentive will create a soothing atmosphere and
communication through sensory experiences such as touch, singing
can be reassuring.
Also….
Surrounding patient with:
• Pictures and mementos’s
• Reading aloud from treasured books
• Playing music
• Giving long gentle strokes
• Reminiscing and recalling life stories
Promote dignity and comfort all the way through life's final moments.
(Kovach CR 1999)
Professionals Working with Dementia
• Physical, psychological, social and spiritual needs.
• Same access to palliative care services
• Assessed and the resulting information is
communicated.
• Encourage people with dementia to eat and drink by
mouth for as long as possible.
• Clinical assessment should be undertaken.
• Decision to resuscitate should take account of any
expressed wishes or beliefs of the person with dementia.
• Recorded in the medical notes and care plans.
(Nice Guidelines 2010)
Quality of life rather than length of life
In the advance stages of dementia quality of life rather
than length of life should be prioritised.
•Comfort and emotional wellbeing – not of prolonging life.
•One to one nursing
•Sitting beside the person
•Communicating
•Watching for signs which may indicate pain (verbal,
non-verbal expressions)
•Sips of water and moistening the persons mouth.
Key Messages for practice
• People with dementia need support to die well, where and how they
wish.
• Care staff need the knowledge and skills to provide good dementia
care and good end of life care.
• Recognising the signs of end of life and avoiding unnecessary
interventions is important.
• Advance care planning can help make sure the individuals wishes
are respected at a time when they may not be able to express them.
• To aim towards the Gold Standards Framework (GSF) which help
staff look holistically at the needs of the person and their family.
• To Liverpool care pathway provide an outline of best practice in care
during the final days and hours of a persons life.
• The reassurance that someone will be helped to die well with
dementia is an important aspect of living well with dementia for both
the person and their family.
(Social Care Institute for Excellence 2010)
The GSF has five goals:
• Consistent high quality care
• Alignment with patients preferences
• Pre-planning and anticipation of needs
• Improved staff confidence and teamwork
• More home based and less hospital based care.
“ The most helpful interventions
are those which ease discomfort
and provide meaningful
connections to family and loved
ones”
Reality and Vision
History of Shackleton
Shackleton was named after Ernest Shackleton –
the Antarctic Explorer.
He accompanied Mr Robert Falcon Scott on the
“Discovery” expedition in 1901 to the South Pole.
Shackleton House
Presentation of Patients Admitted to
Shackleton
• When the unit first opened – patients required
more nursing care and specialist equipment.
• Admitted as long stay patients
• Medication
• Harmful side effects of medications.
Present Day
• Reduced bed status – 8 patients
• Can and may need to increase
Basic Needs
• Nutrition and fluids
• Pressure relief
• Safety
• Time
Especially if the patient is in later stages of End of
Life and requires palliative care.
Presentation of a patient with Dementia
Pressures of everyday life styles and other factors:
• Depression
• Bereavement
• Addiction
• Mental illness
We need to change the general perceptions and
ideation of dementia and how it is portrayed!!
“A Terminal Disease”
End of Life
• Space – to alleviate anxiety, a patient is able to move
around within the unit or garden. Creating his or her own
space, away from others.
• Environment – Although sparsely decorated, this allows
“us” to adapt areas to a specific patients needs i.e. soft
mats, specialist beds.
• Observation – Staff are able to observe from a distance,
allowing the individual to work through their behaviours
in their own time. If they choose, on their own.
• Privacy and dignity
• Adaption of a designated room.
 Beds – to maintain and promote tissue
viability
 Lighting – use of lamps to create a calm
environment
 Resources to carry out specific aspects of
care i.e. oral hygiene and mouth care,
pressure relief, continence or any other
individual requirements as set out in a care
plan
Negative aspects of this arrangement
• Privacy
• Noise levels
• Lack of equipment
Our Vision
Feelings on “Challenging Dementia”
Whatever the diagnosis or challenging
behaviour, when a person faces ‘end of life’,
their needs are no different to any other
human being!
Palliative care and end of life issues
Dementia care should incorporate a
palliative care approach from the time of
diagnosis until death. The aim should be
to support the quality of life of people with
dementia and to enable them to die with
dignity and in the place of their choosing,
while also supporting carers during their
bereavement, which may both anticipate
and follow death.
(NICE clinical guidelines)
Reflective Practice at Shackleton
Sarah Edward RNMH
Family Perspective of End of Life
Care at Shackleton
Mrs Betty Trickett