Through my experience speaking to persons living with dementia and care partners, many express that they were not diagnosed for at least 5 years after they believe their dementia started. Many individuals attribute memory loss to normal signs of aging. However, this is not always the case. It is important to be aware of the signs associated with dementia and to see a doctor and advocate if you do believe your loved one is living with dementia.
Signs associated with dementia:
- changing behaviours
- memory loss
- misplacing items
- problems expressing themselves
- lack of interest in social opportunities
Unfortunately we live in a very biomedical world in which persons diagnosed with dementia are ultimately thought of to be in the 'end stages' of their journey, where they cannot understand, are unable to express themselves, and are no longer able to advocate for themselves. Unfortunately, this is not the case. Persons with dementia are still able to live well and it is through advocacy and challenging stigma to provide persons with dementia with more opportunities to improve their quality of life while living with dementia.
Care partners have also expressed to me that once their loved one was diagnosed with dementia, doctors began speaking directly to care partners about their loved ones health, rather than speaking directly to the person with dementia. It is important that if you see this, to advocate for your loved one and politely express to the doctor that they should be speaking and looking at the person who has dementia, to not ignore them or dismiss their presence.
How to Advocate for your Loved One
- If you notice any signs listed above, have an open and honest conversation with your loved one and express your care and concern.
- Next, make an appointment with your doctor.
- Identify any of these signs you have been noticing and provide the doctor with some examples, but include your loved one in this conversation. They should be involved in their own care.
- Do not dismiss the idea that memory loss is associated with aging.
- Be persistent and ask for further testing to be done. Get a second opinion if you believe it to be dementia related.
- Ensure your loved one is receiving proper care while at the doctor's office and if you notice the doctor dismissing the person, politely redirect them.
- If you notice your doctor's office has limited resources available about dementia, ask them to offer more.
- Seek out social and physical opportunities for your loved one to participate in. Contact your local Alzheimer's Society and access resources to help you become more informed.
- Educate yourself on how to best support your loved one and seek support for yourself along the dementia journey. It is important for care partners to also practice self care and gain support from friends, family, and others.
How do you advocate as a person with dementia or as a care partner? Share with us in the comments below.