Background
Palliative care provision in the context of older age needs to consider specific cognitive issues including confusion, delirium, dementia and/or communication difficulties. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defines three neurocognitive disorders: (1) delirium, (2) mild neurocognitive disorder (mild NCD) and (3) major neurocognitive disorder (major NCD) or dementia.
Delirium is an acute, generally reversible, state of confusion causing a change to cognition. [1,2] The risk of developing delirium is particularly high in end-stage diseases, and cognitive impairment can increase the risk of onset. [1,2,15] Where an older adult with dementia experiences delirium, it is often associated with prolonged hospitalisation, decline in cognitive and physical functioning, rehospitalisation, placement in residential aged care, and death. [1,2] Important characteristics in recognising delirium in a person with dementia is the acuteness of the change in mental status (fluctuating course, inattention, and disorganised thinking or altered level of consciousness). [2] You can read more on this topic on the CareSearch website: Delirium.
Mild cognitive impairment and mild neurocognitive disorder describe cognitive impairment that does not interfere with functional capacity for activities of daily living although it may require greater effort to achieve some tasks. [3] This mild form of cognitive impairment in older people is associated with a higher risk for dementia although it does not always lead to this. [16,17]
Dementia is a progressive and life-limiting condition. [5,18-22] Rather than a specific disease, dementia describes a group of symptoms affecting intellectual and social abilities severely enough to interfere with daily functioning. [5,11,20] Advanced dementia is characterised by profound cognitive impairment, affecting functional dependence and communication. [22] You can read more on this topic on the CareSearch website: Advanced Dementia. Every person with dementia will experience the condition in a unique way.
Dementia is likely the better-known cognitive issues common in older people and becoming better recognised as a terminal condition for which palliative care is appropriate and beneficial. [4-6] The estimated prevalence of dementia in Australia in 2018 was 436,366 persons, and this is predicted to rise to 1,076,129 by 2058. [23] At the same time, 53% of aged care residents had been diagnosed with dementia. [24]
Evidence Summary
Australian and UK guidelines for the care of people with dementia can assist in care delivery and decision-making and include guidance specific to palliative care. [11,25]
Care for a person with advanced dementia should involve a number of key palliative interventions, including advance care planning, avoidance of potentially inappropriate interventions, palliative care referral, and support for the person’s family and/or carer(s). NICE guidelines highlight the need to focus on responding to the individual needs of the person. [25] Person-centred care focuses on supporting the person’s remaining abilities and places the person at the centre of all care planning and tailoring care according to their needs and preferences. [19]
Many people with dementia experience an increasing need for assistance with more basic activities of daily living (ADLs) such as bathing, dressing, and feeding. Assessment and monitoring is important so that assistance can be put into place in a timely manner. [5] Integrated Palliative care Outcome Scale for Dementia IPOS-Dem is a useful and comprehensive tool. [26,27] Available cognitive screening tools are outlined in the Evidence Synthesis.
The increasing prevalence of dementia among people receiving aged care services and the growing focus on consumer-directed care make it important for aged care services to support the person with dementia participate in decision-making. [28] Decisions can span from those relating to everyday care through medical treatment to long-term care placement. [29] Aged care staff and carers can best facilitate shared decision-making if they [30]
- encourage memory and routine
- recognise the abilities and rights of the person living with a cognitive impairment as capable of influencing the decision
- clarify values and understand the significance of relationships and context
- give and share information and offer support.
Difficulty with communication can make management of symptoms of dementia more challenging. [7] Because of deficits in memory, language, judgement, and reasoning ability, people in more advanced stages of dementia often have difficulty recognising and reporting symptoms or side effects, adhering to medication, and complying with treatment and follow-up recommendations. [31] Refusal of care can also be challenging for carers and health professionals and is more common in advanced dementia.
Changed behaviour can arise from biological, psychological, social, and environmental stressors. [8,9] The emphasis of care should be on identifying and responding to the underlying causes of the person’s behaviour not the behaviour itself. [8,9]
While a small number of people display behaviours that pose a serious risk to themselves or others the use of medication in response to this should be carefully considered. When psychotropic medication (antidepressants, anxiolytic/hypnotics, or antipsychotics) is prescribed, a behaviour support plan, careful monitoring for adverse effects and regular evaluation and review must be part of the process. [32,33] Stigmatisation of the term behavioural and psychological symptoms of dementia (BPSD) is a sensitive issue and neutral reference to and explanation of each behaviour is recommended. [8] The term BPSD should not be used to describe the behaviour or symptom. [8] ‘Instead, each behaviour should be named neutrally and the impact of that behaviour should be described in a clear and objective manner.’ (p. 1112) with an emphasis on identifying and responding to the underlying causes of the person’s behaviour. [8]
The following care issues are important in dementia care and can be complex. For more information on these, here we provide links to the section in the Evidence Synthesis:
Family carers contribute significantly to the care at home of people with dementia. [13,34,35] Movement into residential care is often associated with depression and feelings of guilt among residents and carers. Continued involvement as part of the care team can be valued by families as is open communication with care staff. [36]
Quality Statement
Overall, the quality of the included reviews is good with systematic reviews being of acceptable to high quality. Much of the literature focusses on dementia and palliative care for people with advanced dementia.
Page updated 21 June 2022