What to expect if you have dementia

Dementia is a progressive and fatal condition, which means the symptoms will get worse with time. By finding out what stage you have reached, you can better prepare for the future. 

It is important to remember that dementia is different for everyone. You may progress differently depending upon other risk factors and your specific diagnosis. Stages are only used as a tool to provide an estimate.

By finding out what stage the person with dementia has reached, caregivers can better prepare for the future. The stages can act as a guideline for treatments and capabilities for things like driving or living alone. 

The early stage of dementia lasts an average of two years. This is when you will start to see changes in memory and decision-making.

Symptoms or changes to prepare for:

• increase in forgetfulness
• difficulty in coming up with words or explaining thoughts
• minor challenges in complex tasks (example: managing finances or holding a job)
• sometimes losing valuable objects
• subtle mood swings
• trouble with planning or organizing
• mild difficulty concentrating
• at this stage the individual can usually perform most daily activities independently
• people diagnosed with frontotemporal dementia may experience more obvious changes in behaviour or language, whereas someone diagnosed with Lewy body dementia may start experiencing visual hallucinations
• everyone experiences dementia differently

Some actions to consider at this point:

• research Enduring Powers of Attorney (EPA) and what this means for you and the person(s) you designate with this authority
• apply for the Disability Support Program and the Disability Tax Credit where applicable
• review your finances and make a budget for long-term care
• consider creating a living will or making changes to your current one outlining your health-care preferences for the future
• request a referral to a specialist like a neurologist or geriatrician for more specific evaluations and treatment options
• contact your family doctor or nurse practitioner to discuss potential medications to help manage symptoms
• consider a driving assessment to determine whether it is safe to continue driving
• research emergency technologies like Lifeline or Care Link Advantage
• review the Long-Term Care Program and start outlining a care plan as needed
• discuss end-of-life decisions such as regarding your funeral or spiritual ceremony
• finalize legal documents with medical care preferences. (example: Do Not Resuscitate (DNR) Orders, Medical Proxy Designation and Comfort Care Plan)
• look into respite care or counseling for caregivers

The middle stage of dementia is where you will see a more obvious progression of symptoms. Dementia lasts an average of two to four years in this stage, depending upon the diagnosis and other risk factors. 

Symptoms or changes to prepare for:

• decreased knowledge of current events
• major gaps in memory (personal history or names of people you knew well) 
• difficulty recognizing family and friends 
• need help with day-to-day tasks like bathing or getting dressed 
• speaking abilities are likely to get worse (example: forgetting what you were saying mid-sentence) 
• impaired judgement that may be a safety concern (example: leaving the stove on) 
• gradual physical decline, may need a walker or wheelchair for mobility 
• potential incontinence 
• difficulty sleeping throughout the night 
• increase in delusions and paranoia (example: thinking family or partners will harm you or steal from you) 
• repetitive behaviour (example: checking that caregivers are nearby, asking the same question repeatedly)
• people with vascular dementia may start to experience hallucinations

Some actions to consider at this point:

• adding assistive devices to the home like grab bars, modified utensils, etc.
• explore memory care programs or day centres which offer support
• prioritize self-care and ensure caregivers are taking proper breaks and maintaining personal connections to avoid burnout

Dementia will be severe and impact most of your life. Full-time care will be needed to support daily tasks like eating or washing. This is the final and shortest stage and will progress quickly over an average of one or two years before becoming fatal depending upon the diagnosis and other risk factors. 

Symptoms or changes to prepare for:

• vocabulary is extremely limited and will eventually disappear
• severe memory loss and potential time shifting (thinking you are at an earlier part of your life)
• inability to recognize familiar places, faces, or how you look in the mirror
• increase in delusions and hallucinations
• mood swings and emotional outbursts
• incontinence (losing control of your bladder or bowels)
• less mobility and increased risk of falls
• complete dependence upon others for daily life, will be unable to live alone
• you may notice an increase in restlessness at 5 p.m. or 6 p.m. most days

Some actions to consider at this point:

• consult with palliative or hospice care to manage comfort and symptoms
• review long-term care financing
• organize care directives, funeral plans and estate documents
• continue with respite care or counseling for caregivers
• adapt communication styles if vocabulary decreases; non-verbal cues and visual aids are great options

It’s worth remembering that dementia impacts everyone differently and that stages are intended as guidelines.

• What to expect as the person's dementia progresses