Communication is Critical  Individuals with end stage 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  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  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 Psychological Hearing & Visual problems Depression & low mood Pain & general discomfort Poor sleep pattern Nausea & Vomiting Poor appetite & swallowing Disorientation/confusion difficulties Anxiety /fear Respiratory Problems Frustration Skin problems & infections

Social Spiritual & religious Hearing & visual impairment Hope & creativity Disorientation To be listened to What's happening to them Receive respect, honesty & Resistant to intervention truthfulness Lack of insight 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 prescribed) Soft Tissue Throbbing/tender/ache Oedema Heavy/tight Nerve Throbbing/burning/toothache  Gnawing/aching Colic Cramping/exhausting/gripping Principles in Managing Pain

Right 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  – 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. (Lorazepam, Diazepam, Midazolam) – reduce anxiety, sedate, relax muscles and suppress seizures  If agitation is associated with hallucinations, paranoia, psychosis use 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 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   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 Combination Lactulose – patient needs Senna & Bisacodyl Co-danthramer - can to be well hydrated- Direct stimulation of stain urine red and retains water in the gut. myenteric nerves to can burn skin. Do not Action 1-2 days induce peristalsis. use if patient is Docusate Reduce absorption of incontinent increases water water in gut. penetration of stool Action Do not use if colic or 1-3 days obstruction present Laxido/Movicol hydrates harden stool, decrease time in colon & dilates bowel wall to trigger defaecation reflex (dissolve125mls) Action 1- 2 days

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’