Dementia Aware: what you need to know after being diagnosed with dementia
Finding out that you have dementia can be a very upsetting and frightening time for the person with dementia, the caregiver and the family. Suddenly, the life path you were on has now changed direction, your hopes and dreams for the future may seem unattainable, you may feel helpless, hopeless and lost; but what you need to know is that you are not alone, and it is still possible to live a good life with dementia. The key to living a good life is:
- to become informed, knowledge is power
- to talk with your caregiver/family
- to plan for your future
- to take control of your life
If you let it, dementia can take over your identity and your life. Never forget, you are a person with dementia, and you can have a life with dementia.
What you need to know:
- The type of dementia that you have e.g. Alzheimer’s disease, vascular dementia
- Will dementia medication help e.g. cholinesterase inhibitors (Aricept, Exelon, Razadyne, Memantine); this medication, whilst not curative, may slow the progression of dementia.
- What symptoms might you develop next
- When should you follow up with the Doctor
- What resources and support services are available to help in your area
- What financial, legal and health care planning needs to be done
- That you should continue to eat healthy, exercise, take any prescription medications,
socialize, and look after yourself
- If you feel overwhelmed, anxious, or scared and need someone to talk to, you can call the First Link Dementia Helpline @ 1-800-936-6033 (Alzheimer Society of BC)
As you try to understand what a diagnosis of dementia means to you and your caregiver and how it will change your life, you will have many questions and concerns. You will likely want to learn more about your type of dementia, and what education and supports are available to you and your caregiver. There are many on-line sites available to help the person with dementia, and it is important that any information you read is correct and comes from a trusted and audited website. The list below websites that people with dementia and their caregivers have found to be the most helpful and informative.
What you need to know:
For helpful information, education and resources on dementia:
- Alzheimer’s Disease and all other dementias alzheimer.ca/bc
- Lewy body dementia lbda.org
- Frontotemporal dementia theaftd.org
For advice and support written by caregivers for the caregiver and family:
- Family Caregiver Alliance at caregiver.org
For real life experiences about living with Lewy body dementia (N. McNamara) and caring for the person with dementia (S. Macaulay & L. Hirsch):
- com by Susan Macaulay
- alzinfo.org/blogs by Norman McNamara
- com/author/lisahirsch by Lisa Hirsch
For information on community supports/resources, housing, transportation, finances:
Kelowna and Lake Country
- Seniors Outreach Society @ ca; 250-861-6180
West Kelowna and Peachland
- Westside Health Network Society @ com; 250-768-3305
Vernon
- Nexus Community Resource Centre @ ca; 250-545-0585
Penticton
- Penticton and Area Access Society @ accesscentre.org; 250-493-6822
Salmon Arm
- Seniors Resource Centre @ seniorsresource@shaw.ca; 250-832-7000
Kamloops
- The Centre for Seniors Information @ csikamloops.ca 250-828-3653
Tracey Maxfield is a dementia consultant and advocate with over 35 yrs. experience working with dementia populations in the U.K. and Canada. She is presently lobbying the Federal and Provincial Governments and local municipalities to respond to the dementia crisis in B.C., especially in the Okanagan. She can be reached @ imfirmier@outlook.com