Each person experiences dementia in their own way. It can be helpful to think of the way the disease progresses as a series of stages, although not everyone with dementia goes through the stages in the same way. The following information is provided as a guide only.
Caregiving role in the mild stage:
Caregiving role in the middle stage:
Caregiving role in the late stage:
Caregiving role in the end stage:
Managing this new reality is discussed in more details in the following Fact Sheets:
The caregiving role is dependent on the needs of the person with dementia. As the disease progresses, caregiving needs will increase which will require more time and energy. The following activities are for consideration only and offered as a guide. Remember, there is no need to do everything by yourself!
Planning is discussed in more details in the following Fact Sheets:
The demands on your physical and emotional resources will be high if you are a full-time caregiver for a person with dementia. You are a nurse, cook, cleaner, chauffeur, counselor and comforter. If you are fortunate, you have a strong relationship with doctors, nurses, social workers, case managers, home helpers, neighbours and family. You become the person’s defender, navigator and advocate, insisting that the needs you can’t meet must be met by others. You are a caregiver because you have an intimate relationship with the person you are looking after. Usually the bond is love, but not always. The bond may be one of obligation, religion or simply the lack of anyone else to do it. Caregiving responsibilities start off slowly, early in the disease, but can escalate to 24 hours a day, seven days a week, often for years, as the disease progresses.
While all caregiving is stressful and in its way unique, dementia caregiving has a few very specific elements:
“A gradual erosion of our empathy, hope and our compassion – not only for others but also for ourselves.”
(Francoise Mathieu “The Compassion Fatigue Workbook”, 2012)
Viscous circle between physical exhaustion and emotional over-load which feed into each other and grow exponentially.
Factors that are contributors to, or indicators of, caregiver burden or stress:
Managing you stress:
Some practical caregiving tips:
A word about feeling guilty:
It is normal to experience feelings of guilt during caregiving. These feelings may be triggered by: thinking that you could be a better caregiver; thinking that you should not take any breaks for yourself; feeling angry and frustrated with the one you are caring for; or when you are thinking about placement in a residential care home. If you do experience feelings of guilt, you need to say to yourself:
Be realistic about what you can expect of yourself, and recognize that taking care of yourself is the most important thing you can do as a caregiver. The good news is you are not alone. Reach out and contact us at Dementia Society. We will provide you with information and support on your caregiving journey.
Caregiver’s Health is discussed in more details in the following Fact Sheets: