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Planning for Care & Support

Mother and daughter looking and smartphone

Planning for care and support is an important consideration. In working with individuals, couples and families, we see many examples of ways that people plan for the support they need. This can include: 

  • building a routine that includes social contact with family and friends 
  • asking for practical help from family and friends such as home repairs or transportation 
  • connection to community resources  

We encourage you to discuss your needs and/or wishes with your family or social support network and set out a flexible plan to ensure resources are in place if or when you might need them. Some community-based supports can take time to arrange and may include a wait list. We’ve heard from members that getting started with these arrangements earlier than you might feel you need them can be helpful. Take an active role in making decisions that are right for you recognizing that some of your plans may change or need updating over time. 

Home and Community Care

There are various supports available to help you live independently. Home and community care services are designed to help people maintain their quality of life at home, assist with independence for a long as possible and to support family members who are in a caring role. This can include nursing, personal care, physiotherapy, occupational therapy, social work and more. Each province and territory has their own version of publicly-funded home care services that can help people living with rare dementia to stay in their own home. Home care can be accessed with a self-referral or you may request a referral via your primary health care provider. 

Forward with Dementia has information on resources to help you think about everything from transportation services to home supports. 

Members tell us that coordinating resources can be time-consuming and stressful at times. Think about using an advocate, such as a family member or friend, to help you navigate complex community systems and organizations.

More and more people explore how technology might be used to support them at home. There are various options that you might explore including: AGE-WELL and CanAssist.

Hospitalization

Hospitalization for other physical health problems while living with dementia is not uncommon. Hospitalizations are often unplanned. Being prepared and communicating with the health care team is essential to minimize any risks due to cognitive impairment and ensuring the right supports are in place during and after time in hospital. Social workers, discharge planners and hospital advocates are available to help during this time. 

Day Programs

There are many different variations and options for day programs across the country. Some programs are tailored to the needs of people living with dementia at a younger age.  Some examples include: 

Paul’s Club 

YouQuest | focusing on young onset dementia 

Green Care Farms Inc | Empowering People with Dementia

You may also find young onset specific day programs through your local Alzheimer’s Society.  

You may self-refer to many of these day programs. Referrals can also be through your primary health care provider and/or your local Home and Community Care organization. 

Long Term Care

Planning for long term care is sometimes necessary. Exploring your options is important. What type of home or facility, location and cost are all key considerations for you. Knowing the options will help you, if and when this decision becomes relevant for your situation. 

All provinces and territories have different arrangements for an application to long term care, and there are both public and private options. Normally, an application for long term care will occur through the same organization that provides Home and Community Care in your area. If you are unsure where to start, you may: 

  • ask your primary health care provider 
  • contact your local Home and Community Care organization 
  • request a support call with the RDS Canada support team who can advise on these matters 

End-of-Life Care

Conversations about the end-of-life and choices at this time in our life are more commonplace than they once were. We encourage this conversation to ensure your decisions are respected. You may want to have an intimate conversation with a family member, friend or spiritual guide.  

The Canadian Virtual Hospice provides excellent information on palliative and end-of-life care and living with loss and grief. The Government of Canada’s webpage on palliative care and how it can help to improve the quality of life for someone with a serious illness. You may also consult resources such as:

End-of-life care | Alzheimer Society of Canada 

End-of-life care | Canada.ca