Communication is Critical Individuals with end stage dementia may experience high levels of

suffering

Over 60% will receive sub optimal end of life care

Mitchell et al (2009) Sampson et al (2006)

Assessment of symptoms can be complex due to

Cognitive impairment & co-morbidities

Individual behaviour, values & beliefs

Families interpretation of symptoms & understanding of disease

trajectory

Health & social care staffs interpretation of symptoms.

Decision Making Early discussions about decisions for care &

treatment are essential

Clear factual documentation - ambiguous

documentation can lead to inappropriate intervention

and miscommunication

Best interest – consider who should attend –plan

early

Group Work

5 minutes discussion

When would you consider a

person with dementia is potentially

nearing end of life

Indicators of End Stage Dementia Care Requires all care for activities of daily living

Unable to weight bear/ requires a hoist

Urinary & faecal incontinence

No consistent meaningful conversation

Reduced dietary & fluid intake - increased risk of

aspiration

Weight loss

Recurrent infections

Scratching or picking at skin

Restlessness

Rigidity, facial grimacing, teeth grinding

Holistic Assessment for

individuals & their families

What do we mean by

holistic assessment

Co- morbidities impacts on symptom management

Diagnosis Later stages of vascular dementia Two admissions for chest infection Weight loss Medical history includes CVA (result contracted limbs) Hypertension Chronic renal disease Anxiety & depression Other factors Poor sight, and difficulty with hearing Diminished dexterity in hands

Discuss what symptoms this person may experience

Physical Hearing & Visual problems

Pain & general discomfort

Nausea & Vomiting

Poor appetite & swallowing

difficulties

Respiratory Problems

Skin problems

Constipation & infections

Psychological

Depression & low mood

Poor sleep pattern

Disorientation/confusion

Anxiety /fear

Frustration

Social Hearing & visual impairment

Disorientation

What's happening to them

Resistant to intervention

Lack of insight

Spiritual & religious Hope & creativity

To be listened to

Receive respect, honesty &

truthfulness

Religious practices, values,

cultures & beliefs associated with

dying.

Pain Difficult to interpret

Assessment can be challenging

Uncontrolled pain impacts on quality of life &

moving & handling

Importance of communication, good care

planning & team work

Concerns strong analgesia causes increased

sedation & premature death

Recognised Pain Assessment Charts for people with dementia

It is crucial staff consider a holistic approach to pain assessment

Pain tool chosen needs to be effective for individuals – no two people are the same.

Communication & training is critical for care team & relatives in how to use the tool

Abbey Pain Scale

PAINAD (Pain Assessment in Advanced Dementia)

Communication, Education & Documentation

‘Pain is whatever the patient says it is

and exists whenever they says it does’ …

BUT

Many patients may not be able to:-

Communicate pain

Identify location of pain

Describe type of pain

Severity of pain

Types of Pain (will influence

medication prescribed)

Soft Tissue Throbbing/tender/ache

Oedema Heavy/tight

Nerve Throbbing/burning/toothache

Bone Gnawing/aching

Colic Cramping/exhausting/gripping

Principles in Managing Pain

Right Drug by the Ladder

Right dose by mouth/patch/injection

Right Time by clock

Clear documented evidence of description of pain

Clear documented evidence of outcomes from intervention.

Restlessness/agitation Unable to get comfortable

Scratching or picking at skin

Varying degrees of restlessness -

shouting, moaning twitching, jerking,

fidgeting, irregular breathing, plucking

at clothes/ sheets

Hallucinations

Causes Uncontrolled Pain

Dyspnoea

Retained secretions

Constipation

Urinary retention

Drugs – many drugs can cause cognitive decline, agitation, hallucinations & abnormal behaviour. Rationalise drug treatment.

Organ failure (Renal, cardiac or liver).

Causes Metabolic – uraemia, hypercalcaemia,

hypoglycaemia, hypoxia from anaemia.

Infections – UTI, respiratory infections – treating

in some circumstances may be helpful in

reducing terminal restlessness

Cerebral – primary or secondary tumours

Anxiety – unresolved family conflict, denial , fear,

spiritual distress.

Withdrawal – of alcohol, narcotics or nicotine if a

heavy smoker.

Treatment Reassurance

Re-positioning

Consider reversible options – treat infection,

constipation, dehydration, medication review

Medication maybe appropriate

Clear Communication, Documentation &

Evaluation

Medical treatment Sedation – often there is still a need for sedation.

Benzodiazepines (Lorazepam, Diazepam,

Midazolam) – reduce anxiety, sedate, relax

muscles and suppress seizures

If agitation is associated with hallucinations,

paranoia, psychosis use antipsychotic drugs

(Haloperidol) sometimes in conjunction with

benzodiazepines.

Nausea

Identify the cause as this will affect treatment

Metabolic Renal Failure, Chest & Urinary Tract

Infections, Dehydration

Organic Constipation, Bowel obstruction

Medication

Psychological anxiety

Causes often unknown in EoLC

Non –pharmacological treatment Environmental factors posture, fresh air,

appropriate food, correct position.

Small appetising meals – (think after taste)

Good oral hygiene

Good bowel care – are laxatives effective or

required??

Diversional treatment- gentle music

Clear Communication, Documentation &

Evaluation

Pharmacological treatment

If cause is gastro-intestinal poor gastric

emptying /reflux try metoclopramide, Domperidone

If cause is metabolic try haloperidol, Levomepromazine

If hyperacidity consider antacid, omeprazole, lansoprazole

If cause is psychological try lorazepam Evaluate Regularly

Oral Thrush Most common fungal

infection in palliative care population

Predisposing factors

Antibiotics

Steroids

Oral Thrush Treatment

Needs to be

Nystatin suspension – 5mlprescribed x 4 per day. Important that solution held in mouth and fluids not administered directly after

Fluconazole

Constipation often Secondary effects of advanced disease

Poor dietary intake

Poor fluid intake

Reduced immobility

Poor, unfamiliar toileting arrangements

Lack of privacy and dignity

Confusion

Comprehensive Assessment is required

Laxatives Softeners Stimulants Combination

Lactulose – patient needs to be well hydrated- retains water in the gut. Action 1-2 days Docusate Sodium increases water penetration of stool Action 1-3 days Laxido/Movicol hydrates harden stool, decrease time in colon & dilates bowel wall to trigger defaecation reflex (dissolve125mls) Action 1-2 days

Senna & Bisacodyl Direct stimulation of myenteric nerves to induce peristalsis. Reduce absorption of water in gut. Do not use if colic or obstruction present

Co-danthramer - can stain urine red and can burn skin. Do not use if patient is incontinent

Respiratory Secretions

Common symptom at end of life

Distressing for resident family and

carers

Are oral antibiotics appropriate

Nursing care Turning the patient’s body gently onto their side

or turning the head to the side.

Reassure family.

Stop any fluids if not already done if high risk of aspiration.

Maintain moist clean mouth

Apply lip balm.

Suctioning not recommend since this can increase distress and loosen more secretions.

Pharmacological treatment Subcutaneous medication

Hyoscine Butylbromide or Hyoscine Hydrobromide

Low dose Diamorphine

Midazolam

Dame Cicely Saunders

You matter because you are you.

You matter to the last moment of

your life and we will do all we can,

not only to help you die peacefully,

but to live until you die’