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Dementia, cognitive impairment and capacity

What is capacity in the context of dementia and cognitive impairment? 

Dementia is a group of symptoms caused by disorders that affect the brain. [1] Dementia is more common among people over 65 and varies from person to person. Dementia affects a person’s thinking, memory, mood, behaviour, and communication. [1] People with mild cognitive impairment can experience changes to their memory and thinking, but these symptoms are not as severe as dementia. [2] 

For people living with dementia (PLWD) or cognitive impairment, it can be challenging to know what they are able to consent to. This is called decision-making capacity or capacity to consent. A person’s capacity is ‘a legal concept referring to a person’s ability to make a particular decision and to have those decisions recognised and respected by the law’ (page 7). [3] 

Within the aged care context, decisions can range from day-to-day lifestyle and living choices to consenting to medical treatment. Being diagnosed with dementia does not mean a person automatically loses all ability to make decisions for themselves. [3] Family and community education is needed to change people’s attitudes and understanding of capacity. [4] PLWD should be seen as whole and individual people—not just defined by their dementia—in order to safeguard their dignity. [5] 

Why does this matter for rights-based care?

Older people have the right to self-determination, to have choice and control over the care that they receive. For PLWD or cognitive impairment, questions about their decision-making capacity can complicate how to support their self-determination.  

The strengthened Aged Care Quality Standards draws attention to the needs and care of PLWD across many different areas: 

  • Standard 1, Outcome 1.1.2 specifies that aged care services need to meet the needs of PLWD [6] (this is also echoed in Standard 2, Outcome 2.2b from an organisational planning perspective [7]) 
  • While not specific to dementia, Outcome 1.3.3 specifies that people who need support with decision-making are identified and supported to make and take part in decisions that affect them, involving supporters and substitute decision-makers where needed. [8] 
  • Standard 2, Outcome 2.9 states that all aged care workers need to regularly receive competency-based training across key areas, including caring for PLWD. [9] 
  • Standard 3, Outcome 3.2.6 states that the provider must have a system in place to care for PLWD that includes evidence-based strategies. They must recognise dementia in a timely way, identify and regularly review people’s strengths and skills so that they can be used day-to-day, and allow care team members to effectively plan and deliver aged care services that align with what the person wants. [10] 
  • Outcome 3.2.9 flags that aged care providers need to support workers to understand how PLWD communicate, and to communicate effectively in both verbal and non-verbal ways. [10] 
  • Outcome 5.6 addresses the clinical care aspects relevant to cognitive impairment. Service providers should identify and respond to complex clinical care needs through identifying and managing clinical risks, care requirements, deterioration, and changes in behaviour. [11] 
  • Outcome 7.2.3 calls on aged care providers to connect with specialist dementia care services and utilise them as needed. [12] 

Balancing older people’s rights, safety and self-determination with duty of care

Facilitating self-determination for PLWD or cognitive impairment can present an ethical or moral dilemma between rights-based principles such as autonomy and beneficence (doing good). [13, 14] Balancing autonomy of PLWD versus risk can be challenging. [15, 16] Safety, doing what was ‘best’ for the person, or organisational policies can take priority [16, 17] Organisational policies and practices must reflect how complex caring for a person living with cognitive impairment can be. [13]  

Staff may experience stress when regularly facing ethical care issues. [16] Wanting to protect residents from harm is the most common reason for nurses to limit a person’s self-determination. [13] Residents with cognitive impairment can be denied their wishes and the right to self-determination if their choices are seen as harmful. [13] Nurses may also need to factor in their duty of care towards other residents. [13] 

Biases and assumptions about PLWD can be a barrier to self-determination or used to justify denying it. [4, 13] For example, staff may believe that older people can make decisions for themselves, but only on less risky matters like food, clothing, and routines. [18] PLWD or cognitive impairment are seen as less able to express themselves and have limited opportunities for their wishes to be understood. [4, 13]  

Staff may also believe that there is not enough time to facilitate decision-making. [19] Lack of time could be, for example, the time to wait for a decision or response from the person, lack of time to find other options if the person did not consent, or broader facility schedules and routines. [16, 19]  

Organisational policies, practices and culture, and lack of education, training and resources can all contribute to the belief that denying self-determination is acceptable. [13] Nurses need reflexive discussions about cognitive impairment and how it relates to self-determination, autonomy, and selfhood. [13] For personal care workers, training can help improve understanding of capacity and dementia and should be paired with support from staff to improve confidence in facilitating decision-making within their scope of practice. [19] 

Behaviours linked to consent and decision-making relating to PLWD  

Staff may find it challenging to know how to get consent from PLWD because assessing a person’s understanding can be hard. [16] Consent can be interpreted by staff based on what they felt was best for the person. [16] A verbal ‘yes’ or ‘no’ expressed by a PLWD may not always be taken at face value, and consent may not be revisited often even if there were doubts if the person fully understood. [16] Residents’ capacities can change, and nurses still need to assess their capacity to do different tasks and decide on personal care. [13] 

Even when nurses acknowledge that PLWD have the right to make decisions, PLWD can be left out of discussions or not given the chance to provide input because it may be assumed that they do not understand the risks involved. [17] PLWD may also be excluded from contributing to the development and implementation policies and services. [20]  

Residents can be denied self-determination by staff who want to protect them from harm and to respect family wishes, even when they conflict with the person’s wishes. [13, 19] Nurses also grapple with respecting what the person wants now as opposed to what was expressed via advance care plans and previous experiences. [13]  

Person-centred care and supported decision-making

Person-centred care is ‘care that respects and responds to the preferences, needs and values of patients and consumers’. [21] Person-centred care is a common strategy that supports peoples’ wishes and self-determination, involving good communication between nurses and residents. [13] Person-centred care in dementia care should include holistic care that addresses the needs of PLWD and their caregivers, a policy framework for dementia human rights, and services that are tailored to the person, taking into account cultural and religious values. [22] Legal capacity (for example, ensuring consent, involving PLWD in decision-making, and recognising changes in capacity) and capacity assessment are also important to consider in dementia care. [22] 

PLWD have the right to make decisions about aspects of their life. Supportive relationships help the older person maintain their autonomy and take part in decision-making. [16] They may want or need support from a trusted person when making particular decisions – this refers to supported decision-making. [23] Supported decision-making helps PLWD decide on what care looks like for their needs. [22]  

The new Aged Care Act recognises the role of families and carers in supporting older people receiving aged care services. Supported decision-making can now be facilitated via a system-wide model involving registered supporters. [24] An older person can nominate registered supporters to help them maintain their ability to make decisions, obtain information to help them, and communicate on their behalf. [24]  

PLWD should be able to express what they want based on their capacity to make decisions. [22] With the new Aged Care Act, all older people are presumed to have capacity, which applies to every decision that needs to be made. [3] However, capacity can change over time, especially for PLWD or cognitive impairment. [25] Capacity is determined at the time a decision needs to be made and is reassessed to account for capacity changes. [25] 

Formal competency assessments have a role in diagnosing cognitive impairment and determining whether a person is competent to make medical and legal decisions. [13] For people who no longer have decision-making capacity, a substitute decision-maker is legally able to step in and make decisions for them. [26] PLWD should be given the chance to document their wishes as a way to prepare for the loss of capacity. [22] An Advance Care Directive and documenting decision-making preferences can be part of this planning process. [26] 

Technology and dementia

Technology is used in dementia care to support PLWD maintain their independence, safety, wellbeing and quality of life. It also helps families to stay connected and aged care workers improve their communication, coordination, and care planning. [27, 28] 

Examples of technologies used for PLWD include personal alarms, safety mats, falls monitoring devices and other surveillance technologies. Learn more about technology and dementia, assistive technologies in dementia care and types of technology in aged care.  

Monitoring technologies, such as cameras or surveillance systems in aged care can interfere with older people’s privacy, dignity and autonomy. [5] Collecting information about PLWD raises complex issues. PLWD may not be aware that information is being collected and how much, even when consent was given earlier by the person themselves or by a family member or carer. [29, 30]  

These tensions highlight the need for careful and ongoing ethical consideration of rights-based principles, especially privacy and self-determination, when implementing monitoring technologies in aged care. Concerns about privacy may be considered secondary to the benefits of technology, including safety of PLWD. [30] Clear policies, transparent communication and regular review of consent are essential. Consent for the use of technology and the data it may collect, including supported decision-making processes when needed, should be reviewed regularly and remain meaningful as circumstances change.

Want to learn more? 

What can be done?

Enable person-centred care and good communication

Care teams: 

  • Work as a team and engage with older PLWD or cognitive impairment as best as possible. Involve them in shaping the care they receive and include them in conversations about their care. Ask about their needs and preferences to shape how person-centred care is delivered.  
  • Enable older people to engage in advance care planning while they still have decision-making capacity. This will help care teams understand how the person wishes to be cared for if their dementia or cognitive impairment progresses and they are no longer able to make medical decisions for themselves. 
  • Consider how dignity of risk can be balanced with keeping the person safe. Tailor the care plan for each individual person.

Aged care workers: 

  • Learn and practise good verbal and non-verbal communication with PLWD to understand the person and improve the care that you provide.  
  • Do not assume that the older person cannot voice what they need or want just because they are living with dementia or cognitive impairment. 

The evidence:  

  • Sticking to routines, workload demands, being unfamiliar with residents, and protecting other residents are some of the barriers to self-determination of residents with cognitive impairment. [13] 
  • Being unable to communicate well with residents and assuming they do not have capacity are barriers that justify denying residents’ self-determination. [13] Staff can mistakenly view treatment acceptance as meaningful engagement [13] or that the person has capacity. [22] 
  • Good teamwork and interdisciplinary support, with structured ways to approach ethical decision-making, can support self-determination. [13]  
  • Having a person-centred approach supports PLWD to have self-determination, take part in decisions, and be treated respectfully. [16]  
  • An advance care plan is seen as an optimal way to share care wishes with the care team before the person loses capacity. [13] 

Assess consent and capacity, alongside supported decision-making 

Care teams:  

  • Get to know the person and establish rapport with them. Encourage the capacity and choice of residents and find ways to determine whether they do consent if communication is not straightforward e.g., through paying attention to feedback mechanisms, non-verbal body language, individual ways of communicating that the older person may use. 
  • Assess and monitor the person’s capacity to consent via regular interactions with them. Remember that they may be able to consent to certain things but not others.  
  • Adopt reflexive approaches to consent and capacity – people can change their mind, where consent and capacity can change as well. This is complex to navigate in practice and interdisciplinary support and discussions can help. 
  • Recognise changes in a person’s capacity. Flag changes with care team members for interdisciplinary review and support and, where appropriate, complete further assessments. 
  • Conduct formal capacity assessments when needed, adhering to organisational policies. Through relevant capacity assessment(s), gain an understanding of what the PLWD or cognitive impairment is able to consent to. Consult relevant supporters or substitute decision-makers for more critical decisions regarding care where needed.

Organisations:  

  • Support staff in facilitating supported decision-making for older PLWD. This could be through different ways such as via training, guidance, team discussions and/or experiential learning. 
  • Allocate the same staff member to provide regular care for PLWD to help establish rapport.

The evidence: 

  • Once a relationship is established between a staff member and person receiving care, it can be easier to understand their way of communicating and confirm consent. [16] 
  • Consent can change based on the how the older person is in the moment, which is very challenging for staff. [16] Doubts about whether the person has understood or remembers what was discussed also make seeking consent hard. [16] 
  • Staff need to be well supported to make decisions about which wishes to support. Justifying these decisions can be confusing. [18]  
  • Competency assessments do not provide much day-to-day guidance for nurses interacting with residents. [13]  
  • Assessing capacity can be challenging because of difficulty understanding residents’ wishes because of communication issues, different capacity assessment methods, and interacting with residents based on the label of dementia instead of assessing their capacity. [13] 

Implement dementia-specific training and policies

Organisations: 

  • Provide training to aged care workers in supporting PLWD in decision-making. 
  • Ensure there are processes and resources / supports in place to allow PLWD equal opportunity to make informed and supported choices about their care, as appropriate. Obtaining consent from a PLWD may take more staff time and resources and this should be factored in. 
  • Ensure that staff are aware of and trained to implement dementia-care related policies in practice. Staff should have clear understanding about who has responsibility in facilitating decision-making. 
  • Partner with PLWD, their families and staff to inform training and policies for dementia care. PLWD and their families should be involved in decision-making at different levels within society. 

The evidence: 

  • Staff education on dementia, person-centred care and residents’ rights has been reported as helpful. [13]  
  • Lack of time is a barrier to supported decision-making for PLWD. [19]  
  • Limited skills of some care workers, such as lack of knowledge and/or communication skills, dementia, and critical thinking to support self-determination, was a barrier. [13] 
  • It can be unclear who should be responsible for facilitating decision-making for residents. [19] Staff, such as personal care workers, should be adequately trained to upskill if they are positioned to facilitate certain decisions for PLWD. [19] 
  • Staff may not be aware if their facility has a decision-making policy for PLWD. [19] Australian residential aged care facilities have an opportunity to strengthen their policies for supported decision-making and substitute decision-making. [18, 19] Participation of PLWD and their families in decision-making is central to ensuring inclusivity. [22]

Ethically support the use of technology in dementia care

Care teams:  

  • Assess the needs of PLWD and discuss the benefits of using technology with care teams and families, to improve care for PLWD.

Organisations: 

  • Implement privacy policies and protocols for the use of technology in the organisation. 
  • Provide staff training on respecting rights, privacy and dignity, and decision-making related to safety and privacy.
  • Remind the whole organisation about shared values and priorities when using technology for PLWD. 

The evidence: 

  • When using technology, it is important to carefully evaluate the balance between anticipated clinical and psychosocial benefits and the potential privacy risks and sources of distress. [30] 
  • Staff training on privacy and dignity-preserving care helps balance safety protocols with resident preferences. [28] This prepares staff to recognise situations where standard procedures may inadvertently compromise personal dignity, and to make informed, context‑sensitive decisions that uphold ethical standards while maintaining resident safety. 

 

  1. Dementia Australia. About dementia [Internet]. 2026 [cited 2026 Apr 09]. Available from: https://www.dementia.org.au/about-dementia
  2. Dementia Australia. Mild cognitive impairment (MCI) [Internet]. 2025 [cited 2026 Apr 10]. Available from: https://www.dementia.org.au/brain-health/mild-cognitive-impairment-mci
  3. Australian Government Department of Health, Disability and Ageing. Capacity in the registered supporter context: policy for registered supporters [Internet]. 2025 [cited 2026 Apr 17]. Available from: https://www.health.gov.au/sites/default/files/2025-10/capacity-in-the-registered-supporter-context-policy.pdf
  4. Steele L, Carr R, Swaffer K, Phillipson L, Fleming R. Human rights and the confinement of people living with dementia in care homes. Health Hum Rights. 2020;22(1):7-19.
  5. Spencer LH, Carney M, Yang S, Lynch M. Human rights of residents in the nursing home sector: a rapid review of the evidence. Int J Nurs Health Care Res. 2025;8:1616.
  6. Australian Government Aged Care Quality and Safety Commission. Outcome 1.1: Person-centred care [Internet]. 2025 [cited 2026 Feb 10]. Available from: https://www.agedcarequality.gov.au/strengthened-quality-standards/individual/person-centred-care
  7. Australian Government Aged Care Quality and Safety Commission. Outcome 2.2b: Quality, safety and inclusion culture to support individuals [Internet]. 2025 [cited 2026 Apr 01]. Available from: https://www.agedcarequality.gov.au/strengthened-quality-standards/organisation/quality-safety-and-inclusion-culture-support-individuals
  8. Australian Government Aged Care Quality and Safety Commission. Outcome 1.3: Choice, independence and quality of life [Internet]. 2025 [cited 2026 Apr 01]. Available from: https://www.agedcarequality.gov.au/strengthened-quality-standards/individual/choice-independence-and-quality-life
  9. Australian Government Aged Care Quality and Safety Commission. Outcome 2.9: Human resource management [Internet]. 2025 [cited 2026 Apr 01]. Available from: https://www.agedcarequality.gov.au/strengthened-quality-standards/organisation/human-resource-management
  10. Australian Government Aged Care Quality and Safety Commission. Outcome 3.2: Delivery of funded aged care services [Internet]. 2025 [cited 2026 Apr 01]. Available from: https://www.agedcarequality.gov.au/strengthened-quality-standards/care-and-services/delivery-funded-aged-care-services
  11. Australian Government Aged Care Quality and Safety Commission. Outcome 5.6: Cognitive impairment [Internet]. 2025 [cited 2026 Apr 01]. Available from: https://www.agedcarequality.gov.au/strengthened-quality-standards/clinical-care/cognitive-impairment
  12. Australian Government Aged Care Quality and Safety Commission. Outcome 7.2: Transitions [Internet]. 2025 [cited 2026 Apr 01]. Available from: https://www.agedcarequality.gov.au/strengthened-quality-standards/residential-community/transitions
  13. Morris P, McCloskey R, Keeping-Burke L, Manley A. Nurses' provisions for self-determination in residents with cognitive impairment who live in a residential aged care facility: a scoping review. JBI Evid Synth. 2021;19(7):1583-1621.
  14. Shubair SA. Dementia care in gerontological social work: emerging issues and challenges in Saudi Arabia. Front Public Health. 2023;11:1167856.
  15. Steele L, Swaffer K, Carr R, Phillipson L, Fleming R. Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care. Aust J Hum Rights. 2020;26(2):308-328.
  16. Östlund L, Ernsth Bravell M, Johansson L. Working in a gray area-healthcare staff experiences of receiving consent when caring for persons with dementia. Dementia (London). 2023;22(1):144-160.
  17. Davis J, Morgans A, Birks M, Browning C. The rhetoric and reality of nursing in aged care: views from the inside. Contemp Nurse. 2016;52(2-3):191-203.
  18. Cameron N, Fetherstonhaugh D, Bauer M. Challenges faced by residential aged care staff in decision-making for residents with dementia. Dementia (London). 2021;20(4):1270-1283.
  19. Tarzia L, Fetherstonhaugh D, Bauer M, Beattie E, Nay R. “We have to work within the system!”: staff perceptions of organizational barriers to decision making for older adults with dementia in Australian aged care facilities. Res Gerontol Nurs. 2015;8(6):286-292.
  20. Steele L, Swaffer K, Siciliano H, Rose E, Mitchell WJ, Kobier K, et al. Reparations for people living with dementia: recognition, accountability, change, now! Dementia (London). 2023;22(8):1738-1756.
  21. Australian Commission on Safety and Quality in Health Care. Person-centred care [Internet]. 2026 [cited 2026 Apr 17]. Available from: https://www.safetyandquality.gov.au/our-work/partnering-consumers/person-centred-care
  22. Panagiotidou N, Dhooper J, Funk M, Drew N, Seeher K, Dua T, et al. Towards establishing quality standards on human rights for services in dementia care. Int J Older People Nurs. 2024;19(5):e12643.
  23. Older Persons Advocacy Network. Supported decision-making [Internet]. 2026 [cited 2026 Apr 17]. Available from: https://opan.org.au/toolkit/supported-decision-making/
  24. Australian Government Department of Health, Disability and Ageing. Supported decision-making [Internet]. 2025 [cited 2026 Apr 16]. Available from: https://www.health.gov.au/resources/publications/guide-to-aged-care-law/chapter-1-introduction/supported-decision-making?language=en
  25. ELDAC. Overview: Capacity and consent to medical treatment [Internet]. 2025 [cited 2025 Apr 20]. Available from: https://www.eldac.com.au/Our-Toolkits/End-of-Life-Law/Capacity-and-Consent-to-Medical-Treatment/Overview
  26. ELDAC. Factsheet: Substitute decision-making [Internet]. 2025 [cited 2026 Apr 19]. Available from: https://www.eldac.com.au/Our-Toolkits/End-of-Life-Law/Substitute-Decision-Making/Factsheet
  27. Verbeek H, Peisah C, Lima CAM, Rabheru K, Ayalon L. Human rights to inclusive living and care for older people with mental health conditions. Am J Geriatr Psychiatry. 2021;29(10):1015-1020.
  28. Han F, Zheng K. Personal space privacy for residents in eldercare facilities: a systematic review of interventions and implementation challenges. J Aging Environ. 2025:1-22.
  29. Portacolone E, Halpern J, Luxenberg J, Harrison KL, Covinsky KE. Ethical issues raised by the introduction of artificial companions to older adults with cognitive impairment: a call for interdisciplinary collaborations. J Alzheimers Dis. 2020;76(2):445-455.
  30. Tan SY, Taeihagh A, Tripathi A. Tensions and antagonistic interactions of risks and ethics of using robotics and autonomous systems in long-term care. Technol Forecast Soc Change. 2021;167.

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