What to expect if you’re caring for someone with dementia

Dementia is a progressive and fatal condition, which means the symptoms will get worse with time. By finding out what stage the person with dementia has reached, you can better prepare for the future. The stages can act as a guideline for treatments and capabilities for things like driving or living alone. 

It is important to remember that dementia is different for everyone. The person living with dementia may progress differently depending on other risk factors and the specific diagnosis. Stages are only used as an estimate.

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

As a caregiver, be aware of:

• Increase in forgetfulness  
• Having a hard time 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  
• Individuals can 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 the person living with dementia and you. 
• Apply for the Disability Support Program and the Disability Tax Credit where applicable. 
• Research public benefits that may help cover future costs like the provincial benefit for informal caregivers. 
• Help the person with dementia review their finances and make a budget for long-term care. 
• Help the person with dementia create a living will or make changes to their current one outlining their healthcare directives for the future. 
• Request a referral to a specialist like a neurologist or geriatrician for more specific evaluations and treatment options. 
• Contact their family doctor or nurse practitioner to discuss potential medications to help manage symptoms.  
• Consider a driving assessment to determine whether it is safe for someone with dementia to continue driving. 
• Review the Long-Term Care Program and start outlining a care plan as needed. 
• Research emergency technology devices like Lifeline or Care Link Advantages.
• Discuss end-of-life decisions and what they want their funeral or spiritual ceremony to look like. 
• 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 yourself.

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

• Decreased knowledge of current events 
• Major gaps in memory (personal history or names of people they know well) 
• Difficulty recognizing family and friends 
• Help is needed with day-to-day tasks like bathing or getting dressed 
• Speaking abilities are likely to get worse (example: forgetting what they 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, will require increased assistance
• Difficulty sleeping throughout the night 
• Increase in delusions and paranoia (example: thinking family or partners will harm them or steal from them) 
• Repetitive behaviour (example: checking that caregivers are nearby, asking the same question) 
• People diagnosed with vascular dementia may start to experience hallucinations

• Consider adding assistive devices to the home like grab bars, modified utensils, etc. 
• Start exploring memory care programs or day centers that offer support. 
• Look into respite care or counseling for yourself.
• Look into long-term care options and how to access them. 
• Develop a support system: the Alzheimer’s Society has a regular online caregiver support group.
• Prioritize self-care and ensure you’re taking proper breaks and maintain personal connections to avoid burnout as a caregiver.

Dementia will be severe and impact most of their 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 to two years before becoming fatal depending on the diagnosis and other risk factors.

As a caregiver, be aware of:

• Vocabulary is extremely limited and will eventually disappear
• Severe memory loss and potential time shifting (thinking they’re at an earlier part of their life)
• Inability to recognize familiar places, faces, or how they look in the mirror
• Increase in delusions and hallucinations
• Mood swings and emotional outbursts
• Incontinence (losing control of their bladder or bowels)
• Less mobility and increased risk of falls
• Complete dependence on 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 yourself. 
• Prioritize self-care and ensure you’re taking proper breaks and maintain personal connections to avoid burnout as a caregiver.
• Adapt your communication style if you notice a decrease in vocabulary, non-verbal cues and visual aids are a great option.

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
• The Dementia Compass
  
• Later in the Dementia Journey