Decision-making and respecting independence

Respecting individual choice

People who provide care may not be aware of strategies that help make it easier for people with dementia to make many of their own decisions. Or caregivers may find the strategies time-consuming. It is critical to remember how important decision-making can be to maintaining a person's confidence and self-esteem.

Recognize abilities and keep them involved in making decisions

If you are making decisions on behalf of a person living with dementia, use the person’s wishes as a guide, not your own interests.

Recognize that they still have abilities that should be respected and encouraged. Support them to make their own decisions and involve them in decision-making while they can.

Feelings and emotions remain intact long after words have lost their meaning, so look for cues in facial expressions, tone of voice and body language.

Plan for the future

Most people are not comfortable about making plans for a time when they will be unable to make decisions and have control of their own lives. Discussing personal values in relation to illness and death, finances and living arrangements, for example, is difficult. But silence on these issues means that you may not know the person living with dementia's wishes about their own care, and have more difficulty making decisions. Knowing their values and wishes gives support and reassurance to you and other substitute decision-makers.

Strategies include:

• While they are able, talk about what they value and how they define quality of life. Make sure other family members, friends and substitute decision-makers know the results of these discussions.
• Make a plan for the time when they will not be able to make independent decisions. Discuss openly and frankly future health care, personal care and financial decisions.
• Complete legal paperwork to ensure that their wishes are recorded and a substitute decision-maker is named.
• Laws about advance directives and substitute decision-making vary between provinces and territories.

Adjust to changing abilities

As their dementia progresses, identify the abilities they still have, break down complex tasks and decisions into more easily managed options, and respect their choices.

• Reduce the number of options at any one time. For example, ask, "Would you like to have your bath now or later?" rather than, "When do you want a bath?"
• Give step-by-step guidance by asking about one thing at a time and only going on to the next question after each one is answered. "Would you like to go for a walk now?" Then, "Would you like to wear your blue or red sweater?" And then, "Shall we go to the garden or park?"
• Learn to recognize and be sensitive to the meaning behind facial expressions, tone of voice and body language. A person with dementia can communicate meaning to anyone who learns to read the emotional signals conveyed.

Respect a person's values and wishes

When they can no longer make decisions, follow their expressed wishes. If you do not know their wishes, make the decision based on what you think they would want. You may have to weigh the risks and benefits of the decision, and assess how it will affect their quality of life and well-being.

Substitute decision-makers

As a person loses the ability to make decisions, decision-making will involve others, such as family members, friends, substitute decision-makers and health-care providers. Making decisions on another person’s behalf can be difficult and highly stressful, especially when the values and wishes of the person with dementia are unknown, unclear or impossible to follow.

In choosing substitute decision-makers, consider their availability to take on the role, understand and respect the values and wishes of the person living with dementia, their ability to work with others, and ability to resolve conflicts.

Substitute decision-making can be the responsibility of one person. Or, it could be one person for health-care decisions and another for financial decisions.

Once the substitute decision-maker is chosen, the person with dementia and the substitute decision-maker may want to talk about how disputes might be resolved if they arise.

Laws about substitute decision-making vary in different provinces and territories. Contact your local Alzheimer Society for more information.

Advance directive, living will, enduring or durable power of attorney

You can write down the person's values and wishes in an advance directive, a document that records the wishes about the preferred type of future care. If they can no longer make decisions, the advance directive will provide direction.

Other terms used for an advance directive in Canada include living will, or enduring or durable power of attorney for health care. Laws about advance directives vary in different provinces and territories. Contact your local Alzheimer Society for more information.

Competency or capacity assessment

If you have difficulty assessing their ability to make decisions, you may begin making decisions on their behalf too soon. Or if you have difficulty confronting them about the loss of decision-making abilities, you may avoid the issue even though you know they are making poor decisions.

For some major decisions, you may need to have experts assess their ability to make that particular decision. Regulations governing competency or capacity assessment vary in different provinces and territories. Contact your local Alzheimer Society for information about the relevant regulations in your province or territory.

When decisions become difficult

When asked to make a decision, substitute decision-makers must follow as much as possible the expressed wishes of the person with dementia.

The wishes of the person may conflict with those of the substitute decision-maker, family or society. For example, a person could express a wish to live at home, but unsafe smoking could put that person and neighbours at risk of fire. Also, if several caregivers are involved in decision-making, they may not be able to agree on what the person's wishes are.

If conflict develops, or if the person's wishes are not known, unclear or impossible to follow, review the decision based on:

• Values of the person with dementia
• Risks and benefits of the decision to the person with dementia, caregivers and others affected
• Effect on the physical and emotional well-being of the person with dementia
• Effect on the quality of life of the person with dementia, their family and friends.

You may also want to consult an impartial, trusted third party to help resolve the issue. With some decisions, a resolution may take time.

Topics for discussion about the future

Future health care

What kind of treatment would they want for other major health problems, such as heart disease or cancer? Would they consider elective surgery, such as cataract removal? Decisions should take into account the effect the treatment would have on both their physical and cognitive health.

End-of-life care

The following chart outlines different approaches to treatment that need to be understood when making decisions for care in the later stages of dementia. Knowing their wishes in advance for these difficult situations can ease the burden of making decisions. However, health-care providers may not offer choices if they would be ineffective or may cause more harm than good.

Levels of care

Finances

Person responsible: Has someone been named to look after their financial interests? This may or may not be the same person responsible for decisions relating to health and personal care.

Financial documents: Are financial and legal documents, such as wills, insurance policies and bank accounts, gathered together in a safe location?

Financial priorities: Have financial priorities been set? For example, a person with dementia might indicate that the top priority for financial resources be the person's comfort and well-being.

Personal care

Language: What language should be used in communicating with the person with dementia?

Food: Do they want to follow a specific type of diet, such as vegetarian or kosher?

Hygiene: Is keeping well-groomed important? Do they want specific routines to be followed, such as hair dyeing or beard trimming?

Clothing: Do they want to wear specific clothing, such as a favourite sweater, prayer shawl or head covering?

Daily routines: Are there daily habits to be followed? Are they a morning person or a night person? Examples: having tea before breakfast or watching the news every evening.

Health routines: Do they want to follow specific health practices such as taking daily vitamins or having special dental care?

Activities: Do they want to continue to pursue certain activities such as daily walks, golf, quilting or music?

Fears: Are they especially afraid of certain things such as dogs, storms, loud noises or spiders?

Provision of care: When extra help is needed, are finances available to provide this? When living at home is not possible, what type of care facility would they prefer? Examples: small, large, culturally-specific.

Living alone

Living in a place that is safe, familiar and comfortable is important to everyone, including people with dementia.

A diagnosis of dementia does not automatically mean that a person is incapable of living alone. Some people may be able to live on their own for some time after the diagnosis. Others may be at too much risk to continue living alone.

It is often difficult to decide when a person is at too much risk to continue living alone. When people who live alone have Alzheimer’s disease or other dementias, diagnosis may occur later because their symptoms may go unrecognized.

A premature move from home should be avoided. Moving people with dementia away from home to live, for example, with a child, or in a long-term care setting, may feel like a loss of freedom. Being able to access support and safety services, however, may result in more independence.

Each person's living situation should be monitored and assessed carefully, as their dementia progresses.

Some factors to consider

Determining when living alone is no longer safe or desirable

When people with dementia no longer understand their own safety and can’t look after themselves, family members, friends and health-care providers may need to weigh the risks of living alone against the benefits of supporting them to live at home.

In many situations, caregiving falls to one person. Hold a meeting for family and friends when they are at an early stage of dementia, so that you can plan what each family member or friend can realistically do to help, now and in the future.

Barriers within the healthcare, community care and legal systems

Family members, friends and healthcare providers often face barriers when trying to determine if a move from home is needed or if additional support can be provided in the home.

These barriers include the difficulty of sharing information under privacy and confidentiality regulations; the limited availability of services to support independent living; and the complexities of competency legislation (the laws that determine when a person is no longer able to make certain decisions).

Living environments that provide safety, quality of life and support

People living with dementia need to live in safe environments that support quality of life. The amount and type of support available are important factors in determining if a person can live alone. For example, a person with a large family, or someone who lives in a community with many services may be better able to live alone than someone with no family, living in a community with limited services.

Family members, friends and healthcare providers can help reduce risks for people with dementia who want to live alone. For example, if they frequently leave the stove on, consider disconnecting the stove and finding other ways to provide hot food, such as Meals on Wheels.

Wherever possible, the person living with dementia should take part in discussions concerning their own future.

More information and resources

• Contact your local Alzheimer Society for province/territory-specific information on:
  • Substitute decision-making for health care and finances
  • Advance directives
  • Competency assessments
• Let Me Decide. William Molloy et al, Newgrange Press (Canada), May, 2000. For ordering: 905-628-0354.
• The Moral Challenge of Alzheimer's Disease. Ethical Issues from Diagnosis to Dying (2nd ed.). Stephen Post, The Johns Hopkins University Press, 2000. For ordering: www.press.jhu.edu.