Your loved one has been diagnosed with dementia. Now what?
Carole Green, BFA-MT
Program Manager, Ottawa
When you first hear the word “Dementia," the diagnosis can bring you to a standstill. Generally considered as a disease leading to memory and cognitive processing issues, the term dementia is actually an overarching word for a collection of symptoms leading to brain decline. Once people have a chance to digest the diagnosis, they may not know where to go next. Here are some recommendations that may help:
Health care: Proper medical care can assist you in determining the best course of action and next steps. Treatment of dementia is typically most effective when started early in the disease process, and although there currently is not a defined cure, some medications may alleviate some symptoms for prolonged periods of time.
It is important to be actively involved in health care and personal decisions early in the process. Remember, the person living with dementia may still be able to maintain a sense of autonomy and participate in their own health care decisions and future plans.
Professional Support: Learning more about dementia and different approaches can be important tool for care partners and friends. An important first step, if you live in Ottawa/Renfrew County, is to make a self-referral to the Dementia Society of Ottawa and Renfrew County, which can be done can be made online or by phone. They are a valuable resource for programs, services, education, referrals as well as support. A Dementia Care Coach provides individualized support to improve the quality of life of care partners, families and individuals living with dementia. Visit them online at dementiahelp.ca or call 1-888-889-6002. In Eastern Counties, please contact the Alzheimer’s Society of Cornwall and District, alzheimer.ca/en/cornwall.
Support groups and educational sessions, such as the ones offered by the Dementia Society, provide care partners and the person living with dementia with information, support, resources and an opportunity to meet others living with a similar situation. Care partners can learn positive approaches, self-care techniques and how to focus on maintaining abilities for now and in the future.
Care partners who understand the disease and the increased challenges that come with its progression are better able to support the person living with dementia and get the help that’s right for them.
Focus on what’s important: Conversations with key care partners and family after diagnosis can allow the person living with dementia to set priorities based on what is important to them, such as deciding when to stop working, pursuing new goals, or travelling, etc. It can also allow the person living with dementia to make informed decisions about legal, financial and care matters, and make their wishes known to their family and friends.
Care partners can help the person living with dementia focus on the tasks they can still do rather than the losses, which is essential to maximize their autonomy.
Take Care: Recognize that both the care partner and the person living with dementia are going through a variety of emotions. Feelings of anger, resentment, embarrassment, frustration, fear or sadness are all common emotions. Remember, these emotions are normal and may come and go depending on the day. It’s important to note that when one person is living with dementia, so is their care partner.
Maintaining physical health, trying to stay active, making healthy food choices and spending time with your family and friends, are all very important in maintaining your health. Staying active can help reduce stress, give a much-needed break and extend the ability to provide balanced care.
Encourage advocacy: Underneath the cloak of dementia, the person you remember is still there. People living with dementia can continue to live meaningful lives. Many people living with dementia find that sharing experiences with others living with the diagnosis can be very helpful in reducing the stigma of the disease, validating the sense of loss, reducing loneliness and in encouraging others to reach out for support.
People living with dementia can also make their voices heard to raise awareness about the disease, and the need for quality care and increased funding for research.
Community Support: Community programs such as frozen meal delivery, transportation, in-home personal support, homemaking services, adult day programs and respite are available to provide support to both the person living with dementia and the care partner. Carefor operates over 30 programs across the Champlain region that directly and indirectly support individuals living with dementia and their care partners.
The dedicated staff at Carefor’s adult day programs, respite program and retirement residences always use the term “every door is the right door” when it comes to helping clients and care partners get connected to programs and services. When clients arrive at one of our programs, the staff team get to know them by utilising the Best Friend’s Approach to Dementia Care, an approach that focuses on learning the client’s life story, building rapport and understanding dementia. By utilising this approach, staff create relationships with the clients, and learn additional creative ways they can assist throughout the time the client is participating in our programs.
These programs offer clients living with dementia a chance to enjoy activities of interest designed to enhance their well-being in a safe and supportive setting while providing respite and support for the care partners. Staff also consult with care partners to offer information, support and referrals to other community services and programs, where needed.