Finding out you have dementia can be upsetting and frightening 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 at 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.
Below are 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 www.alzheimer.ca/bc
Lewy body dementia www.lbda.org
Frontotemporal dementia www.theaftd.org
For advice and support written by caregivers for the caregiver and family:
Family Caregiver Alliance family.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):
myalzheimerstory.com by Susan Macaulay
www.alzinfo.org/blogs by Norman McNamara
Huffingtonpost.com/author/lisahirsch by Lisa Hirsch
For information on community supports/resources, housing, transportation, finances:
Kelowna and Lake Country
Seniors Outreach Society seniorsoutreach.ca; 250-861-6180
West Kelowna and Peachland
Westside Health Network Society westsidehealthnetwork.com; 250-768-3305
Vernon
Nexus Community Resource Centre nexusbc.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 www.csikamloops.ca 250-828-3653