What is advanced dementia?
Dementia is a progressive, life-limiting condition that eventually leads to death. In its advanced stages, individuals experience severe cognitive decline, lose verbal communication, and become entirely dependent on caregivers for daily needs. [1] The decline is gradual, making it difficult to pinpoint the terminal phase. [1-3] Palliative care prioritises dignity and comfort, addressing symptoms such as pain, agitation, and difficulty swallowing (dysphagia). [2,4] As the body weakens, managing infections (e.g. urinary tract infections and pneumonia) and addressing swallowing difficulties, nutrition, and medication delivery require careful planning. is important. [5-9] Supporting families and carers is integral to wholistic care. [2,4]
Why advanced dementia matters in aged care
As of 2022, 54% of residents in permanent aged care had dementia, while two-thirds of people with dementia lived in the community. With Australia's ageing population, dementia cases are projected to more than double by 2058. [10] Dementia reduces life expectancy compared to other chronic diseases. [8,10,11] Since 2016, it has been the leading cause of death among Australian women and is projected to soon be the nation’s leading cause of death overall. [10]
Despite experiencing symptoms as severely as cancer patients, people with advanced dementia are less likely to receive palliative care. [2-4,8] This can lead to poor symptom management and unnecessary treatments in the final stages of life. [4,8,12] Pain, frequently under-assessed and under-treated, may manifest as agitation or aggression. [13]
People with advanced dementia are non-verbal, fully dependent, have difficulty swallowing, and often experience incontinence. Reduced mobility increases infection risk, particularly pneumonia. [2,8] Palliative care can reduce unnecessary hospitalisations and improve quality of life for both individuals and their carers. [8]
Family carers, who act as advocates and substitute decision-makers, experience significant emotional and practical stress, affecting both their wellbeing and caregiving capacity. [14-16] Connecting carers with support programs and providing guidance can help ease this burden. [14-16]
People in the early stages of dementia often seek reassurance that future care will uphold their dignity and honour their preferences. [17] The Aged Care Quality Standards emphasise dignity and the importance of person-centred care in addressing the diverse needs of all older people, including those with dementia. [18]
What the evidence tells us
Palliative care for advanced dementia involves advance care planning, symptom management, and support for families. People with dementia often have one or more long-term conditions (multimorbidity), sensory losses (e.g. vision and hearing loss) and poor oral health that should be addressed to improve quality of life. [19,20] Regular pain assessments are important, as people with severe dementia may experience more pain than those in earlier stages. [21,22] Pain in people with dementia is often linked to co-existing medical conditions, particularly musculoskeletal conditions and long-term neuropathic conditions such as diabetes. [22] Dementia-specific pain assessment tools rely on observed behaviours such as facial expressions (e.g. frowning, grimacing, rapid blinking), vocalisations (e.g. crying, gasping, moaning, sighing, calling out), and defensive postures. [22] Examples of tools include PAINAD and the Abbey Pain Scale. [22,23]
Effective communication is key to advanced dementia care. Early advance care planning discussions align care with the person’s values and preferences as cognitive decline progresses. [14,24] Engaging families ensures care aligns with prior wishes and supports carers during difficult decisions. [24] Positive partnerships between families and staff enhance care quality of overall experience. [25,26]
Non-pharmacological treatments, such as music therapy, massage, and environmental modifications, can reduce agitation and anxiety and improve quality of life. [26-31] Staff training in communication and person-centred care enhances responsiveness to the needs of residents with dementia. [32]
Compassionate care prioritises dignity and quality of life over life-prolonging interventions that may not improve wellbeing. [5] Ethical issues arise in feeding, hydration, and resuscitation decisions, requiring careful discussions between care providers and families. [5-7,14,29] Balancing prior directives that may be invasive and of limited benefit with end-of-life care needs can be complex, particularly regarding artificial nutrition. [5]
Cultural considerations
Cultural beliefs shape end-of-life care decisions, including dementia care. [33] Some communities misunderstand the nature of dementia and available care options. [34] Among culturally and linguistically diverse (CALD) groups, families may perceive external care as failure or abandonment, limiting access to professional services and increasing carer burden. [34] Culturally appropriate activities and communication can reduce stigma and improve engagement with support services. [34] Adapting activities, food, and communication approaches to cultural needs enhances comfort for people with dementia and their families. [15,16,33]
Cultural norms influence caregiving roles, intervention acceptance, and end-of-life care preferences. [15] Some cultures view family caregiving as a duty, shaping care decisions and the preferred place of death. [1,15] Expressions of pain also vary across cultures, affecting pain management approaches. [21] Providing culturally responsive care is essential but challenging due to language barriers and limited cultural competence training for aged care staff. [12,15,16,25,26,33] Training staff improves communication, care planning, and decision-making, helping align care with individual values. [15,21]
Implications for families
The Quality Standards require aged care staff to engage families as partners in care planning, ensuring alignment with the person’s wishes (Outcome 3.2.6) [18] Families play a central role in dementia care, contributing essential insights into preferences and reducing behavioural symptoms such as agitation, aggression, restlessness, and wandering. [35] Regular meetings help carers navigate challenges and build confidence. [16]
Family carers often carry the emotional and physical burden of caring, which can lead to stress and pre-death grief. Effective palliative care involves families by including them in care planning, providing education and information on advanced dementia, and giving emotional support. [35] Structured family meetings and carer support programs may alleviate uncertainty and stress and reduce the likelihood of crises. [36,37]
After an older person moves to residential care, families often remain actively involved. [16,26] The transition can be stressful and clear communication between staff and family is essential. [15,26] Regular updates and informal check-ins foster trust and engagement, ensuring families feel valued. [26] Family knowledge about a person’s preferences can be invaluable in guiding care. [38] Poor communication, however, can lead to frustration and strained relationships. [15,26]
Family members often make end-of-life decisions which can be emotionally overwhelming. They may struggle with uncertainty and the fear of making the wrong decisions. [14] Advance care planning conversations can build trust, provide reassurance, and help families and carers make informed choices. [35]
Considerations for home care
Home-based palliative care allows people to remain in a familiar environment, promoting comfort and a sense of security. Effective home care includes maintaining safety, supporting familiar routines, and ensuring clear communication. [39] Carers benefit from understanding dementia’s likely progression and anticipating increasing needs. [14,39] Linking carers with community resources and respite care helps manage the demands of caregiving. [39,40] Daily task assistance and discussions on care options help make caring safer and more manageable. [39] However, inconsistent or limited support and resources can make home care difficult to sustain. [40]
Those caring for someone with dementia at home often experience stress, isolation, and emotional strain due to high caregiving demands and limited social support. [37,40] Providing access to community resources and social networks can improve carer wellbeing and sustainability. [37]
Referring people with dementia to specialist palliative care ensures comprehensive support for symptom management, psychosocial needs, and advance care planning. Specialist teams offer expertise in symptom relief, optimise comfort, and assist with complex decision-making, reducing unnecessary hospitalisations and improving quality of life for both individuals and carers. [41]
Page updated 18 February 2025