Part 2

Signs of Advanced Dementia

Signs that someone has advanced dementia:

  • Forgets events even after a few minutes
  • Limited ability to understand or use speech
  • Incontinent of urine and/or faeces
  • Limited recognition of friends and family
  • Needs help with all activities of daily living (ADLs)
  • Does not recognize everyday objects
  • Disrupted sleep
  • Increased sleepiness through the day
  • Feels restless, perhaps looking for a loved one
  • May reject being helped and display responsive behaviors such as ‘aggression’ especially when feeling threatened or trapped
  • Difficulty walking, confined to a wheelchair/bed/chair bound
  • Uncontrolled movements
  • Weight loss
  • Dysphagia/difficulty swallowing/choking on thin fluids
  • No longer recognises food as food

The Palliative Approach to End of Life Care for People with Advanced Dementia

  • Acknowledges there is no prospect of cure
  • Recognises death is a normal process
  • Seeks to neither hasten nor postpone death
  • Enhances the quality of life that is left through comfort-focused care
  • Manages distressing symptoms
  • Maintains personhood and life meaning
  • Ensures physical comfort
  • Aims to reduce family suffering associated with the person’s decline and death

Planning Good Palliative Care Involves

  • Knowing what to expect as the disease progresses (disease trajectory)
  • An idea of dying timeframe (prognosis)
  • The person’s wishes
  • Avoiding futile treatments
  • Providing comfort and symptom relief
  • Supporting, communicating, and informing families to enable them to make decisions in the best interests of the person in care

Why is End of Life Care Planning So Hard for Dementia?

  • Dementia is a diagnosis which still has stigma attached
  • Use of Advance Care Directives and Plans, although improving, is still less common
  • At time of a potential admission to a health care facility, the person with advanced dementia lacks cognitive capacity to inform of their wishes
  • Conflict when family wishes vs the dying person’s wishes, and the best interests of the dying person are not the same
  • Does ‘person responsible’ know enough about the person’s beliefs, values, and wishes to make informed decisions?
  • Timing of decisions may be crisis driven ‘too little time to absorb information & decide’
  • Decisions may occur in context of anticipatory grief, guilt, impending loss, and emotional pain

How Can We Improve Care Planning and Decision-Making?

  • Demonstrate knowledge of prognostic indicators
  • Legally document the person’s wishes (DIRECTIVES) 
  • Work collaboratively with the ‘person responsible’ in a timelier way to provide them a framework to make such decisions to “represent the person’s wishes”
  • Document these collaboratively
  • Provide educational resources to guide family members or the ‘person responsible’ to make ethically difficult choices for the person in care

Prognostic Indicators for Advanced Dementia

Prognostic indicators are signs, symptoms, concurrent illnesses/co-morbidities that aid in identification of people with advanced dementia who are likely in the last months/weeks/days of life that need supportive and palliative care. This is inherently difficult, but if we are better able to predict those people with advanced dementia who are in the final year of life there is good evidence that we are more likely able to deliver well-coordinated, high quality end of life care.

The following are recognized prognostic indicators for advanced dementia:

  1. Functional Decline- what does that mean?
  2. Reduced ability to perform tasks of everyday living associated with decreasing physical and/or cognitive functioning
  3. Dementia will progressively make the person more physically disabled
  4. Cognitive abilities required to coordinate physical function and tasks declines
  5. Different types of dementia show different patterns of decline

What factors contribute to functional decline?

  • Co-morbidities
  • Concurrent illness
  • Infection
  • Age of person in care
  • Gender
  • Falls
  • Declining neurological function of the brain areas involved in language, cognition, coordination, and physical function occurs 

In the last months, ambulatory ability is likely to be lost – the person with dementia cannot walk without personal assistance. In the last weeks of life, the ability to sit up without assistance is likely to be lost e.g. requires arm rests or he/she will fall over. In the last days, it is likely the person will lose the ability to smile and to hold their head up independently.

2. ContinenceBladder Function in Advanced Dementia

The person does not know/remember the steps related to using the toilet/bathroom   

  • Needs to go to the toilet/bathroom
  • To go to the toilet/bathroom in a private place
  • To allow time to get to the toilet/bathroom
  • To undress in time
  • To remain continent
  • Needs to drink sufficient fluids

A person with advanced dementia will usually become completely incontinent of both urine and faeces in the final months.

  • Eating, Drinking, Swallowing Impairment and Weight Loss

What happens to eating and drinking in someone with advanced dementia?

  • Difficulty swallowing/chewing
  • Eating less, weight loss
  • Unable to recognise food
  • Unable to eat on their own
  • Lower basal metabolic rate
  • Malnutrition or under nutrition
  • Skin break down
  • Aspiration pneumonia

What Are the Signs of Dysphagia (swallowing impairment)?

  • Food sticking in throat, clearing throat
  • Coughing, choking, short of breath
  • Wet sounding voice, gurgling
  • Nasal and oral regurgitation
  • Needing to swallow several times
  • Drooling, dribbling
  • Pooling, pouching
  • Uncoordinated tongue movements
  • Slow, increased time to finish

People will have difficulty swallowing oral medication and will need to have tablets crushed/converted to a syrup or given in another way. e.g. transdermal patch for pain relief

4. Consciousness

People with advanced dementia will become increasingly sleepy and in the last months of life will likely be sleeping more than 50% of the day.

Consciousness is:

  • the state of being aware of physical events or mental concepts.
  • we are awake and responsive to our surroundings.

Levels of Consciousness of The Person with Advanced Dementia

Eye opening or change in facial expressionSpeech or voices
Verbal responseGentle touch
Movement responsePhysical care

Sleep Patterns in Someone with Dementia

  • Disturbed sleep patterns affect 25% to 35% of individuals with Alzheimer’s
  • ‘Sun downing’ confusion, ‘wandering’, and agitation at dusk is common
  • Daytime sleepiness & sudden-onset sleep during daytime is common with Parkinson’s Disease and Lewy Body Dementia
  • Co-morbidities like Congestive Cardiac Failure (CCF), cause higher rates of Obstructive Sleep Apnea & Restless Legs Syndrome, with fragmented sleep and excessive daytime sleepiness

5. Physical Symptoms

Physical Symptoms – recurring falls, recurring aspiration pneumonia, chest infections, and UTIs +/- delirium, and worsening pressure areas are all signs that a person is in the last months or weeks of their life.

6. Communication[MK1] 

People with advanced dementia lose the ability to communicate with words. In the last months of life, they have limited verbal language i.e. says 6 words or less and may pace, cry out, or scream. If English is the person’s second language, the person may revert to their first language due to loss of English. In the last weeks of life, the person may have no verbal language, may only make sounds, may cry out or scream, may be resistive to care, increased social withdrawal likely, and make limited eye contact. In the last days of life, crying out may cease, resistiveness to care may decrease, there may be complete social withdrawal with eyes closed, or they may have a blank stare.

7. Co-morbidities

The coexistence of two or more disease processes

E.g. dementia and diabetes

  • It is important to consider co-morbidities as they are highly likely in older people
  • It is important to ensure treatment for one condition does not make another condition worse
  • The impact on illness (dementia) trajectory is recognized

8. Concurrent illnesses

  • An illness that occurs at the same time as advanced dementia
  • An illness which may increase symptoms or adds to discomfort
  • An illness that may not necessarily shorten the life of a person with dementia but could necessitate additional interventions

Common concurrent illnesses include:

  • Urinary tract infections (UTI)
  • Aspiration pneumonia, respiratory infection
  • Pressure areas
  • Rigidity of limbs, contractures, fractures
  • Skin diseases e.g. candida
  • Constipation or diarrhoea
  • Septicaemia
  • Delirium

Infection and Advanced Dementia

  • Infection often precipitates death
  • Immobility, incontinence, and aspiration put the person at higher risk of infection
  • Higher risk of infected pressure sores and UTIs than the healthy older person
  • Infection is detected late because the person cannot report it
  • Immune function may be impaired
  • Infection in advanced dementia is inevitable
  • Reduce risks through HAND HYGIENE, skin care, continence care, mouth care, assistance with eating, and modified diet
  • Antibiotics may be used for comfort/symptom management rather than a cure
  • Antibiotics can cause complications

Assessment, Treatment and Management of Physical Symptoms,

Nutrition, and Hydration                          

Eating and drinking for a person with dementia are other common concerns for family and carers. These issues are complex for all members of the care team as well. It is important to have a fundamental understanding that the reduction in oral intake is a symptom of the disease dementia.                           

Managing nutrition and hydration involves assessing the cause. If there are simple treatable causes, these should be pursued first, for example ill-fitting dentures. Artificial nutrition and hydration are a more invasive intervention that can cause pain as well as other medical difficulties and there is consensus that this treatment does not improve outcomes for people with end stage dementia. Allowing a person to stop eating and drinking is a comfortable way for the person to die.

Good nutritional care requires an individualized approach that includes early recognition of weight loss and the identification and management of likely causes e.g. adverse medication effects, poor oral health, or depression. This careful attention to assessment and management of a person’s nutritional requirements improves quality-of-life.

Providing oral foods and fluid, even in small amounts, is preferable to using more invasive enteral e.g. Nasogastric or PEG feeding methods. However, a dysphagia assessment is essential to provide direction for oral feeding. The care team member assisting with eating should be seated at eye-level with the person and take time to establish and maintain a relationship with that person to create an atmosphere that is conducive to feeling relaxed. This approach to eating enhances the person’s nutritional intake and improves his / her social well-being. Recommendations regarding fluid therapy that are based on an ongoing assessment of each person’s circumstances, including their treatment preferences and their family’s, improve the satisfaction with the care that is provided.

Regular presentation of fluids that include strategies such as a colourful beverage cart, verbal prompting, or complying with the person’s preferences will increase the amount of oral fluid intake for those able to have oral hydration. Frequent small sips of fluids can reduce the person’s sensation of thirst and oral discomfort that is associated with dehydration.

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