Presentation from Dementia Intensive Treatment Service (Shackleton Acute Assessment Unit)

Team Introduction:Mike Cormason RMN N/P

Becci Richards RMNSarah Edward RNMHSue Buckland Support WorkerMrs 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 Sue Buckland support worker

4. Reflective Practice at Shackleton Sarah Edward RNMH

5. Family Perspective 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

• Functional Impairment IADL ADL

• Behavioural Signs Mood swings Agitation Wandering

• Insidious onset

• No gait difficulties

Clinical features of ADSevere stage of AD (MMSE <10)

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

IMPAIRMENT

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

Born February 6th 1911

Lived until the age of 93

Died of pneumonia

Diagnosed AD in 1994

At the time of diagnosis said “I feel fine”

Client 2

Born March 10th 1930

Lived until the age of 74

Died of pneumonia

Diagnosed AD in 1994

At the time of diagnosis deniedany 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 MissC whose hobby, was to write to famous people. He sent his love and offered comfort and supportfor 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 havea greater need for assistance over a longerperiod 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 acutephysical pain in the same way as otherdiseases, but people in the late stages ofdementia 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 interventionsare those which ease discomfortand provide meaningfulconnections to family and lovedones”

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 ofLife and requires palliative care.

Presentation of a patient with DementiaPressures 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 otherindividual 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 challengingbehaviour, when a person faces ‘end of life’,their needs are no different to any otherhuman 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