Sometimes family and health care professionals do not respect the decision-making rights of older people. This is especially true for people living with dementia who face assumptions that they cannot understand information and make their own choices. Older adults have been greatly impacted by the COVID-19 pandemic. Many need to make critical health care decisions, or plan for incapability and serious illness. During this time of heightened risk, fear, and health care system stress, it is important to make sure we are not undermining the autonomy of older adults.

Decision-making capacity depends on the decision at hand: we can be capable of making some decisions, and not others, depending on our ability to understand different kinds of information. Decision-making capacity can fluctuate as a result of: time of day; medication issues; anxiety, depression or trauma; and environmental factors, such as noise. A person with dementia may be capable of making health care decisions, particularly if they have a supporter available to help them. Research has shown supporters can help people to understand information, consider the consequences of a decision, express needs, wishes, and values, and communicate effectively with health care professionals.

BC laws recognize the right of an adult to have a supporter present to help with decision-making and communication. An adult can appoint a representative for health and personal care using a representation agreement. Further, the Health Care (Consent) and Care Facility (Admission) Act protects the right to have a supporter participate regardless of whether they have appointed a representative. Importantly, even if an adult is not capable of making health care decisions independently, they still have the right to be consulted during the decision-making process, and to have their pre-expressed wishes and values respected. Physical distancing can make it difficult to involve a supporter or substitute decision-maker. Technology can be an ally in supporting connection and participation. However, this approach requires extra vigilance for undue influence and other abusive dynamics, as well as support to ensure people with disabilities can properly access technology.

Appointing a trustworthy representative can support decision-making inclusion for older people and people with disabilities. Many people will hire a lawyer to draft their representation agreement. A good representative is a person who:

• Knows the person well;
• Respects their autonomy;
• Proactively consults regarding needs and wishes; and
• Communicates effectively with health care professionals.

Creating a disability-friendly environment can help increase the ability of people living with dementia to participate in decision-making. You can use these strategies when working with older adults:

• Use clear and simple language.
• Spend time with the person to learn about their communication needs and abilities.
• Allow the adult more time to describe their needs and make decisions.
• Meet with the adult in a quiet room.
• Allow the adult to have a supporter to help them understand and communicate.
• Meet with the adult at the best time of day for them.
• Even if the adult is not capable, involve them as much as possible in the decision.

Inclusive strategies can be critical for older adults; however, ultimately, they enhance accessibility for everyone.

For a booklet and animated videos on the health care decision-making rights of people living with dementia, visit the Canadian Centre for Elder Law’s website (bcli.org/ccel). The booklet is available in English, French, Chinese, and Punjabi. These tools were funded by the Law Foundation of BC, the Vancouver Foundation, and the Notary Foundation.