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Caring For Someone With Dementia

Each person experiences dementia in their own way. It may be helpful to think of the way the disease progresses as a series of stages, although not everyone with dementia will experience the stages in the same way. The following information is provided as a guide only.
Mild Stage
Middle Stage
Late Stage
End Stage

Caregiver role in the mild stage:

  • Plan for the future. While the person is still able, help plan their future care options including resolving legal and financial issues. Consider discussions of power of attorney for care and power of attorney for property which deals with finances.
  • Create an Advanced Care Plan. Creating an Advance Care Plan allows us to reflect on our values and how they guide care decisions. It guides us to provide direction to our family, friends and professional caregivers so they never need to guess what we want. It brings peace of mind and is a gift our loved ones will appreciate.
  • Promote a daily routine. Make up a schedule of appointments and activities to serve as a reminder. 
  • Encourage social connections. Staying socially engaged may support brain health. Pursue social activities that are meaningful and incorporate physical activity.
  • Encourage independence. We all like our independence and it is important to encourage it as long as safety is maintained. If required, provide specific instructions for tasks, one at a time as well as verbal cues and prompts when appropriate.
  • Be flexible. What works well one day may not work at all the next. Provide positive encouragement and support to the person.

Learn about dementia and the services that will be available as the condition progresses and both your needs change.

Caregiver role in the middle stage:

  • Learn strategies for support.  As the needs of person with dementia change, consider connecting with others who are going through similar experiences (for example, attend one of our support groups).
  • Safety. Safety in the home, community, driving and other activities of daily living may start to become a concern. If you are concerned or have questions, contact your family doctor or your Dementia Care Coach as there are assistive devices, support services and various strategies to promote safe living. 
  • Plan meaningful activities.  It can be challenging to fill the day with meaningful activities that satisfy both you and the person living with dementia. Think about what goes into meaningful activities and consider:
    • Productive activities (helps people feel valued  and contributes to our sense of well-being)
    • Leisure activities (things that are fun to do and spark joy). These can be active activities where participation occurs or passive activities where one observes an enjoyable activity. 
    • Self-care activities (taking care of ourselves). Includes activities such as bathing, grooming, house chores, shopping, taking care of our mind/body, and rest and restoration.  
  • Modify your plan. As needs change and enlist the help and support of others, such as family and friends. Consider attending our learning series called Making the Decision.
  • Take care of yourself.
  • Re-connect with your Dementia Care Coach.  Ongoing check-ins with your Dementia Care Coach can help you with changing needs. For example, a Dementia Care Coach can help identify appropriate community services as the need for care increases. They can also help you discuss and determine the need for increasing professional care and the possibility of moving into a retirement home or Long Term Care.

Caregiving role in the late stage:

  • Share your knowledge of the person living with dementia.  Professionals may take over your primary caregiving role and you will become a valuable resource to the health care team. Whether you are supporting the person living with dementia at home, retirement home or Long Term Care, your knowledge is crucial to providing quality care.
  • Prepare for the adjustment. Moving to into a care home is a big change for both you and the person with dementia. This adjustment period will take time. Consider watching the On Demand video of Adjusting to Long Term Care: Moving in and Making the Transition.
  • Keep lines of communication open between you and care staff. If there is a move into a care home, keep in touch with the doctor and/or care staff about the person’s condition, care and treatment.
  • The need for companionship and belonging remains. Help the person with dementia remain stimulated with meaningful activities such as sharing photographs, reminiscing, and listening to music.
  • Take care of yourself.
  • Re-connect with your Dementia Care Coach.  Ongoing check-ins with your Dementia Care Coach can help you with changing needs.

Caregiving role in the end stage:

  • Provide comfort and dignity. Ensure their wishes and values are upheld as much as possible.
  • Grief is a frequent companion of dementia. Caregivers often experience a continuous and profound sense of loss and subsequent grief as they live through the changes associated with the progression of dementia. Feelings of guilt, grief, and loss are a normal, but if you experience them, it is important to realize that you may be stressed and you may need to seek emotional support for yourself. 
  • Take care of yourself.
  • Re-connect with your Dementia Care Coach.  Ongoing check-ins with your Dementia Care Coach can help you with changing needs.

Communication

When supporting someone living with dementia, sometimes communication can become difficult. As the disease progresses and the brain changes, the ability of a person living with dementia to comprehend and process vocabulary may decrease. Learning how to communicate effectively with someone living with dementia can help with maintaining a connection and better outcomes.  Here are 10 communications tips:

10 communications tips

Planning ahead

The caregiver’s role is dependent on the needs of the person with dementia. As the disease progresses, care needs will increase which will require more time and energy. 

Taking Care of Yourself

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. It is important to build strong relationships with doctors, nurses, social workers, case managers, home helpers, neighbours, and family. You become the person’s voice, 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 for whom you are caring. 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 condition progresses.

Managing stress

  • Know your strengths and limitations. Try to put supports in place for those aspects of caring that create the most stress for you. We all have different limitations and abilities.
  • Know your own warning signs, and act to make changes. Don’t wait until you are overwhelmed.
  • Identify sources of stress. Ask yourself, “what is causing stress for me?” Sources of stress might be that you have too much to do, family disagreements, feelings of inadequacy, or the inability to say “no”.
  • Identify what you can and what you cannot change. Remember, we can only change ourselves; we cannot change another person. When you try to change things over which you have no control, you will only increase your sense of frustration.
  • Take action. Identify which stress reducers work for you. Taking walks, gardening, meditation etc.

Some practical caregiving tips

  • Learn as much as you can about caring for someone with dementia
  • Seek support
  • Find out about local community support services and how to access programs that may be of benefit to you and your family by contacting a Dementia Care Coach. 
  • Speak with others who are experiencing similar circumstances
  • Allow time for adequate sleep, exercise, and proper nutrition
  • Practice self-care

Remember…

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 that you are not alone. We are here to help™. Contact us at The Dementia Society. We will provide you with information and support on your caregiving journey.

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