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What Should You Plan Ahead?

Being diagnosed with dementia does not mean you cannot live a quality life according to your wishes. While individuals with dementia can maintain independence for several years, it is important to plan ahead for future care.

Planning ahead is important in ensuring that the journey through dementia is as smooth and well-managed as possible. Have discussions with your family and friends and let them know what your values and wishes are in terms of healthcare, personal care, end-of-life planning, and financial planning.

Having a plan fosters a sense of security and quality of life for all involved. It also provides support and guidance for your family to make decisions that align with your wishes.

What Should You Plan Ahead?

Being diagnosed with dementia does not mean you cannot live a quality life according to your wishes. While individuals with dementia can maintain independence for several years, it is important to plan ahead for future care.

Planning ahead is important in ensuring that the journey through dementia is as smooth and well-managed as possible. Have discussions with your family and friends and let them know what your values and wishes are in terms of healthcare, personal care, end-of-life planning, and financial planning.

Having a plan fosters a sense of security and quality of life for all involved. It also provides support and guidance for your family to make decisions that align with your wishes.

Advance Care Planning

Advance Care Planning (ACP) is a process where you share your wishes for your future care. ACP involves having discussions with your loved ones and documenting your beliefs, values, and wishes for health, personal and end-of-life care.

ACP also involves choosing a substitute decision-maker. A substitute decision-maker is a designated person who can make decisions on your behalf regarding your care when you are not able to make these decisions yourself. They ensure that the decisions align with your wishes and values, and lead to a better quality of life.

It is never too soon to plan ahead. By starting early, you are better able to consider your wishes and healthcare priorities, learn about the necessary health plans, and choose your substitute decision-maker.

Benefits of Advance Care Planning

  • Respecting your autonomy: ACP helps you clarify your values and wishes with the important people in your life, which helps your loved ones make decisions about your care in the future. It also ensures that healthcare providers deliver care that is consistent with your values, goals, and preferences.
  • Reducing arguments among family members: Expressing your wishes clearly can reduce confusion and arguments among your family members when they need to make decisions on your behalf.
  • Optimizing quality of life: ACP reduces unwanted and unnecessary treatments and prepares for end-of-life communication. This not only saves costs but also supports caregivers’ well-being and maintains the care recipient’s independence and quality of life[1].
  • Offering peace of mind: Having an Advance Care Plan in place can provide you comfort in knowing that your future care will be in trusted hands and carried out according to your wishes.
  •  

The following are five steps to Advance Care Planning outlined by Advance Care Planning Canada[2].

Step 1: Think about what your wishes are.

Think about your values and preferences for your future healthcare and personal care. Consider the following:

  • What do I value most about my mental and physical health (e.g., living independently, being able to communicate with others, etc.)?
  • What types of treatment or medical procedures would I want or not want to have (e.g., CPR, feeding tube, etc.)?
  • What are my preferences regarding personal care activities (e.g., bathing, toileting, feeding, etc.)?
  • What are my preferences for care settings (e.g., cared for at home, in a hospital, long-term care home, etc.)?

 

Step 2: Learn about your current health conditions.

  • Learn about and explore different medical procedures and treatment options for your condition with healthcare providers.
  • Some medical procedures prioritize improving quality of life, while others focus on prolonging life. Consider what is more important to you.

Step 3: Choose a substitute decision-maker.

  • Appoint a substitute decision-maker who understands and respects your wishes. This person will make decisions about your health care, medical treatment, nutrition, living arrangements, hygiene, and safety when you are unable to[3].
  • A substitute decision-maker may be a spouse, partner, companion, family member, or trusted friend who is capable of making these important decisions and ensuring they reflect your needs and wishes.
  • A substitute decision-maker may also be known as a medical proxy, an agent, or a Power of Attorney for Personal Care in various provinces and territories.
  • Legal requirements for appointing a substitute decision-maker vary by province/territory. Depending on the province/territory, you may need to complete certain legal forms.
  • When choosing a substitute decision-maker, consider the following:
    • Do I trust this person to make healthcare decisions that align with my wishes?
    • Can they communicate clearly with my healthcare team?
    • Are they capable of making difficult decisions during stressful times?
    • Is this person willing and available to speak for me when I cannot speak for myself?

 

Step 4: Talk about your wishes.

  • Talk to your substitute decision-maker, family, and health team about how you want to be taken care of as your condition progresses, including end-of-life care.
  • Share your written plan if you have one.

Step 5: Record your Advance Care Plan.

  • Record and document your wishes, preferences, and values in an Advance Care Plan. This can be in the form of a written guide, letter, video, or audio recording.
    • Separate documents may be required, and the documents used may vary based on your province or territory.
  • Review your Advance Care Plan regularly to ensure it reflects your wishes over time. You can revise your plan at any time as your needs and values cha
  • Share your Advance Care Plan with your Substitute Decision-Maker.

Advance Care Planning

Advance Care Planning (ACP) is a process where you share your wishes for your future care. ACP involves having discussions with your loved ones and documenting your beliefs, values, and wishes for health, personal and end-of-life care.

ACP also involves choosing a substitute decision-maker. A substitute decision-maker is a designated person who can make decisions on your behalf regarding your care when you are not able to make these decisions yourself. They ensure that the decisions align with your wishes and values, and lead to a better quality of life.

It is never too soon to plan ahead. By starting early, you are better able to consider your wishes and healthcare priorities, learn about the necessary health plans, and choose your substitute decision-maker.

Benefits of Advance Care Planning

  • Respecting your autonomy: ACP helps you clarify your values and wishes with the important people in your life, which helps your loved ones make decisions about your care in the future. It also ensures that healthcare providers deliver care that is consistent with your values, goals, and preferences.
  • Reducing arguments among family members: Expressing your wishes clearly can reduce confusion and arguments among your family members when they need to make decisions on your behalf.
  • Optimizing quality of life: ACP reduces unwanted and unnecessary treatments and prepares for end-of-life communication. This not only saves costs but also supports caregivers’ well-being and maintains the care recipient’s independence and quality of life[1].
  • Offering peace of mind: Having an Advance Care Plan in place can provide you comfort in knowing that your future care will be in trusted hands and carried out according to your wishes.
  •  

The following are five steps to Advance Care Planning outlined by Advance Care Planning Canada[2].

Step 1: Think about what your wishes are.

Think about your values and preferences for your future healthcare and personal care. Consider the following:

  • What do I value most about my mental and physical health (e.g., living independently, being able to communicate with others, etc.)?
  • What types of treatment or medical procedures would I want or not want to have (e.g., CPR, feeding tube, etc.)?
  • What are my preferences regarding personal care activities (e.g., bathing, toileting, feeding, etc.)?
  • What are my preferences for care settings (e.g., cared for at home, in a hospital, long-term care home, etc.)?

 

Step 2: Learn about your current health conditions.

  • Learn about and explore different medical procedures and treatment options for your condition with healthcare providers.
  • Some medical procedures prioritize improving quality of life, while others focus on prolonging life. Consider what is more important to you.

Step 3: Choose a substitute decision-maker.

  • Appoint a substitute decision-maker who understands and respects your wishes. This person will make decisions about your health care, medical treatment, nutrition, living arrangements, hygiene, and safety when you are unable to[3].
  • A substitute decision-maker may be a spouse, partner, companion, family member, or trusted friend who is capable of making these important decisions and ensuring they reflect your needs and wishes.
  • A substitute decision-maker may also be known as a medical proxy, an agent, or a Power of Attorney for Personal Care in various provinces and territories.
  • Legal requirements for appointing a substitute decision-maker vary by province/territory. Depending on the province/territory, you may need to complete certain legal forms.
  • When choosing a substitute decision-maker, consider the following:
    • Do I trust this person to make healthcare decisions that align with my wishes?
    • Can they communicate clearly with my healthcare team?
    • Are they capable of making difficult decisions during stressful times?
    • Is this person willing and available to speak for me when I cannot speak for myself?

 

Step 4: Talk about your wishes.

  • Talk to your substitute decision-maker, family, and health team about how you want to be taken care of as your condition progresses, including end-of-life care.
  • Share your written plan if you have one.

Step 5: Record your Advance Care Plan.

  • Record and document your wishes, preferences, and values in an Advance Care Plan. This can be in the form of a written guide, letter, video, or audio recording.
    • Separate documents may be required, and the documents used may vary based on your province or territory.
  • Review your Advance Care Plan regularly to ensure it reflects your wishes over time. You can revise your plan at any time as your needs and values cha
  • Share your Advance Care Plan with your Substitute Decision-Maker.

Financial Planning

In addition to personal care and healthcare, another important aspect to plan ahead is the cost of care and how you want your assets to be managed or distributed. Planning ahead can help alleviate your worries and prevent court involvement in financial affairs[4].

Important considerations regarding financial planning

  • Create an inventory of your assets. You may need to review and create an inventory of your assets. Collect and organize relevant documents and information, such as bank accounts, credit cards, or insurance policies.
  • Consider the costs you may incur now and in the future. As your condition progresses, costs of care and living may increase. Individuals with dementia face significantly higher costs of care than those without dementia[5]. These costs may include ongoing medical diagnosis and treatment, prescription drugs, personal care supplies, adult day programs and other community services, in-home care services, and long-term residential care services[6].
  • Review government benefits and support programs. You and your caregivers may be eligible for government benefits, such as disability tax credits, family caregiver benefits, and other supports. Your provincial and municipal governments may also provide benefits for individuals with dementia. Review and apply for these benefits as soon as possible, as the application process can take several months.
  • Consider signing a power of attorney (POA) for finances and property. A POA is a legal document that you sign to give one or more than one person the authority to manage your finances and property on your behalf. This person is known as your attorney. There are two types of POA:
    • A general power of attorney allows your attorney to help manage your finances and property temporarily. It is effective only when you are mentally capable of managing your own affairs. It ends if you lose mental capacity to manage your own affairs.
    • An enduring or continuing power of attorney lets your attorney continue acting for you after you lose mentally capacity to manage your finances and property. This may be beneficial for individuals with dementia whose condition may progressively affect their capacity to manage their affairs.
  • Learn about the Public Guardian and Trustee. If you become unable to make decisions and you do not have a Power of Attorney, a guardian will be appointed to make financial decisions on your behalf. This guardian will be appointed by the government’s Office of the Public Guardian and Trustee or by a court.
  • Make a will. A will specifies how your estate (e.g., property, money, and other assets) will be distributed and managed after your death. If you do not have a will, your estate will be distributed according to provincial or territorial laws. Having dementia does not necessarily mean an individual is incapable of writing, changing, or executing their will. Consult with legal and medical professionals to determine whether you have the required capacity to execute your will.
  • Laws and documentation regarding powers of attorney and wills may vary based on your province or territory. Consult a lawyer to ensure you are following the laws in your province or territory and that your document is valid.

 

Learn more about Financial Support in the “Community Support and Care Services” section.

Financial Planning and Related Tips for Caregivers

As dementia progresses, individuals may experience increased difficulty in managing their finances. Here are some tips for how caregivers can help individuals with dementia manage financial planning:[7]

  • Observe closely: Look for any signs of financial problems, such as unpaid bills or excessive bank charges.
  • Discuss services: Talk about financial planning services that can help manage expenses with your loved one.
  • Automate bills: Help your loved ones arrange automatic bill payments.
  • Prevent scams: Help your loved one register their phone number on the National Do Not Call List.

 

 

Financial Planning

In addition to personal care and healthcare, another important aspect to plan ahead is the cost of care and how you want your assets to be managed or distributed. Planning ahead can help alleviate your worries and prevent court involvement in financial affairs[4].

Important considerations regarding financial planning

  • Create an inventory of your assets. You may need to review and create an inventory of your assets. Collect and organize relevant documents and information, such as bank accounts, credit cards, or insurance policies.
  • Consider the costs you may incur now and in the future. As your condition progresses, costs of care and living may increase. Individuals with dementia face significantly higher costs of care than those without dementia[5]. These costs may include ongoing medical diagnosis and treatment, prescription drugs, personal care supplies, adult day programs and other community services, in-home care services, and long-term residential care services[6].
  • Review government benefits and support programs. You and your caregivers may be eligible for government benefits, such as disability tax credits, family caregiver benefits, and other supports. Your provincial and municipal governments may also provide benefits for individuals with dementia. Review and apply for these benefits as soon as possible, as the application process can take several months.
  • Consider signing a power of attorney (POA) for finances and property. A POA is a legal document that you sign to give one or more than one person the authority to manage your finances and property on your behalf. This person is known as your attorney. There are two types of POA:
    • A general power of attorney allows your attorney to help manage your finances and property temporarily. It is effective only when you are mentally capable of managing your own affairs. It ends if you lose mental capacity to manage your own affairs.
    • An enduring or continuing power of attorney lets your attorney continue acting for you after you lose mentally capacity to manage your finances and property. This may be beneficial for individuals with dementia whose condition may progressively affect their capacity to manage their affairs.
  • Learn about the Public Guardian and Trustee. If you become unable to make decisions and you do not have a Power of Attorney, a guardian will be appointed to make financial decisions on your behalf. This guardian will be appointed by the government’s Office of the Public Guardian and Trustee or by a court.
  • Make a will. A will specifies how your estate (e.g., property, money, and other assets) will be distributed and managed after your death. If you do not have a will, your estate will be distributed according to provincial or territorial laws. Having dementia does not necessarily mean an individual is incapable of writing, changing, or executing their will. Consult with legal and medical professionals to determine whether you have the required capacity to execute your will.
  • Laws and documentation regarding powers of attorney and wills may vary based on your province or territory. Consult a lawyer to ensure you are following the laws in your province or territory and that your document is valid.

 

Learn more about Financial Support in the “Community Support and Care Services” section.

Financial Planning and Related Tips for Caregivers

As dementia progresses, individuals may experience increased difficulty in managing their finances. Here are some tips for how caregivers can help individuals with dementia manage financial planning:[7]

  • Observe closely: Look for any signs of financial problems, such as unpaid bills or excessive bank charges.
  • Discuss services: Talk about financial planning services that can help manage expenses with your loved one.
  • Automate bills: Help your loved ones arrange automatic bill payments.
  • Prevent scams: Help your loved one register their phone number on the National Do Not Call List.

 

 

Planning for Online Security

In the digital era, increased online engagement has increased the susceptibility of individuals with dementia to experience cyber fraud. It is important to take proactive measures to help protect their online identity.

Ensuring online security for individuals with dementia has significant benefits. Fostering a safer digital experience promotes their well-being and supports their independence and emotional health. It shields against online threats and protects personal information. Additionally, it safeguards financial assets, helping prevent unauthorized access and online scams.

For family and caregivers, knowing their loved ones are engaging safely online provides peace of mind, while also serving as a legal safeguard against potential issues arising from online activities, particularly financial exploitation.

Tips for protecting your online security

  • Education and awareness: Learn about the basics and essential information of online security. Talk to your family and friends if you have any questions regarding online security.
  • Password management: Protect your personal information and accounts by setting up strong passwords[8].
  • Limit online activities: Remove or block access to risky websites and limit access to only safe and necessary websites.
  • Enable two-factor authentication: For important accounts, consider enabling two-factor authentication. This is a login security feature that requires you to enter your account password followed by a one-time verification code sent to your mobile device.
  • Streamline online presence: Regularly assess and deactivate any unused or unnecessary online accounts.
  • Simplify your online interactions: Consider limiting your social media usage to one or two platforms that align with your preferences. Having fewer accounts can reduce the risk of cyber fraud and makes account management easier.
  • Protect personal information: Do not post private information on social media platforms, like your address or bank account numbers.
  • Beware of email scams: Do not reply to any emails asking for your own personal information, such as your bank account number, password, credit card numbers, etc. These are likely scams.

 

Planning for Online Security

In the digital era, increased online engagement has increased the susceptibility of individuals with dementia to experience cyber fraud. It is important to take proactive measures to help protect their online identity.

Ensuring online security for individuals with dementia has significant benefits. Fostering a safer digital experience promotes their well-being and supports their independence and emotional health. It shields against online threats and protects personal information. Additionally, it safeguards financial assets, helping prevent unauthorized access and online scams.

For family and caregivers, knowing their loved ones are engaging safely online provides peace of mind, while also serving as a legal safeguard against potential issues arising from online activities, particularly financial exploitation.

Tips for protecting your online security

  • Education and awareness: Learn about the basics and essential information of online security. Talk to your family and friends if you have any questions regarding online security.
  • Password management: Protect your personal information and accounts by setting up strong passwords[8].
  • Limit online activities: Remove or block access to risky websites and limit access to only safe and necessary websites.
  • Enable two-factor authentication: For important accounts, consider enabling two-factor authentication. This is a login security feature that requires you to enter your account password followed by a one-time verification code sent to your mobile device.
  • Streamline online presence: Regularly assess and deactivate any unused or unnecessary online accounts.
  • Simplify your online interactions: Consider limiting your social media usage to one or two platforms that align with your preferences. Having fewer accounts can reduce the risk of cyber fraud and makes account management easier.
  • Protect personal information: Do not post private information on social media platforms, like your address or bank account numbers.
  • Beware of email scams: Do not reply to any emails asking for your own personal information, such as your bank account number, password, credit card numbers, etc. These are likely scams.

 

End-of-Life Planning

Although having a conversation with loved ones about end-of-life planning can be challenging, planning ahead is essential, especially when your cognitive capacity has started to decline.

Planning ahead will make it easier for your family to understand and follow your preferences for end-of-life care. It could also ease the burden on your caregivers and reduce conflicts among your family members when making difficult decisions.

 

Here are some key considerations for end-of-life planning:

Palliative care

Palliative care is a form of specialized care that is focused on providing comfort and quality of life for individuals at the last stages of life. Palliative care can be provided in a variety of care settings, such as at home, in a hospice, or in a hospital. Consider where you prefer to receive care at the end of your life. During the later stages of dementia, doctors may ask about an individual’s preferences regarding palliative care.

Life-sustaining treatments

Think about the quality of life you value. Consider your preferences regarding life-sustaining treatments, such as a feeding tube, ventilator, and dialysis. It is important to talk to your healthcare providers to learn about potential side effects or complications that may be associated with life-sustaining treatments. You should also discuss with your family to ensure they are aware of your wishes.

For more details, refer to the above section, “Advance Care Planning”.

 

Funeral or burial arrangements

Individuals with dementia should engage in conversations with family and friends about their preferences for funeral or burial arrangements and preferences. Consider your preferences for religious ceremonies, floral arrangements, music selection, and venue. You should also consider your preference for burial, cremation, or other methods to ensure that your wishes are honoured[9].

End-of-Life Planning

Although having a conversation with loved ones about end-of-life planning can be challenging, planning ahead is essential, especially when your cognitive capacity has started to decline.

Planning ahead will make it easier for your family to understand and follow your preferences for end-of-life care. It could also ease the burden on your caregivers and reduce conflicts among your family members when making difficult decisions.

 

Here are some key considerations for end-of-life planning:

Palliative care

Palliative care is a form of specialized care that is focused on providing comfort and quality of life for individuals at the last stages of life. Palliative care can be provided in a variety of care settings, such as at home, in a hospice, or in a hospital. Consider where you prefer to receive care at the end of your life. During the later stages of dementia, doctors may ask about an individual’s preferences regarding palliative care.

Life-sustaining treatments

Think about the quality of life you value. Consider your preferences regarding life-sustaining treatments, such as a feeding tube, ventilator, and dialysis. It is important to talk to your healthcare providers to learn about potential side effects or complications that may be associated with life-sustaining treatments. You should also discuss with your family to ensure they are aware of your wishes.

For more details, refer to the above section, “Advance Care Planning”.

 

Funeral or burial arrangements

Individuals with dementia should engage in conversations with family and friends about their preferences for funeral or burial arrangements and preferences. Consider your preferences for religious ceremonies, floral arrangements, music selection, and venue. You should also consider your preference for burial, cremation, or other methods to ensure that your wishes are honoured[9].

References

[1] Brinkman-Stoppelenburg, A., Rietjens, J. A., & van der Heide, A. (2014). The effects of advance care planning on end-of-life care: a systematic review. Palliative medicine, 28(8), 1000–1025. https://doi.org/10.1177/0269216314526272

[2] Advance Care Planning. (n.d.). Advance Care Planning in 5 Steps. https://www.advancecareplanning.ca/individuals-families/

[3] https://healthcareathome.ca/getting-started/substitute-decision-maker/

[4] National Institute on Aging (NIA). (2020, October 29). Legal and Financial Planning for People with Alzheimer’s Disease. National Institute on Aging. https://www.nia.nih.gov/health/legal-and-financial-planning-people-alzheimers#advice

[5] https://www.nia.nih.gov/news/people-dementia-and-their-families-disproportionally-handle-costs-care

[6] https://www.alz.org/help-support/caregiving/financial-legal-planning/planning-for-care-costs

[7] National Institute on Aging (NIA). (2020, October 29). Legal and Financial Planning for People with Alzheimer’s Disease. National Institute on Aging. https://www.nia.nih.gov/health/legal-and-financial-planning-people-alzheimers#advice

[8] https://www.ageuk.org.uk/information-advice/work-learning/technology-internet/password-security/

[9] Alzheimer’s Association. (n.d.). End of Life Planning. https://www.alz.org/help-support/i-have-alz/plan-for-your-future/end_of_life_planning#wishes

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