Managing this new reality
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:
- While the person is still able, help plan their future care options including legal and financial issues.
- Make up a schedule of appointments and activities to help as a reminder. Promote as much daily routine as possible.
- Encourage as many social connections, including physical activities, as they are able.
- Encourage independence 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 day. Provide positive encouragement and support to the person.
- Learn about dementia and the services that will be available as the disease progresses and both your needs change (homecare, respite care, community programs like Meals on Wheels and care facilities).
- Contact us at The Dementia Society for information and support for both the person with dementia and yourself.
Caregiving role in the middle stage:
- Contact us at The Dementia Society for information and support. Learn strategies on how to support the changing needs of the person with dementia and connect with other caregivers who are on the same journey.
- Ensure safety. Assess safety concerns in the home, driving issues, and also safety issues regarding increasing inability to cook, shop, or pay bills.
- Staff at the The Dementia Society can connect you with the appropriate professionals who can help you with these concerns.
- Plan activities for the person with dementia that are appropriate and promote satisfaction and achievement.
- Develop a plan for providing care as the needs of the person with dementia change and enlist the help and support of others, such as family and friends.
- Arrange for appropriate community services as care needs increase. Try to maintain the person in his or her current residence as long as possible.
- Assess the need for increasing professional care and possibility of moving into a care facility.
- Take care of yourself.
Caregiving role in the late stage:
- Professionals will take over your primary caregiving role and you will become a valuable resource to the health care team. Your knowledge of the person is crucial in providing quality care.
- Be prepared for the adjustment that needs to take place for both you and the person with dementia if you move the person into a care facility. The person with dementia is moving to a new home with new faces. You are adjusting from being the person providing hands-on care to being a “partner in care”. This adjustment period will take time.
- Keep in touch with the doctor and/or care facility staff about the person’s condition, care and treatment; attend care planning meetings in a care facility when invited, keep lines of communication open between you and the care staff.
- The need for companionship and belonging remains. Help the person with dementia remain stimulated with appropriate activities such as reading, sharing photographs, reminiscing, and listening to music.
Caregiving role in the end stage:
- Providing comfort and dignity is a priority.
- Some abilities remain, although many are lost as the disease progresses. The person may still keep their sense of touch and hearing, and their ability to respond to emotion, even in the final stages
Managing this new reality is discussed in more details in the following Fact Sheets:
How can I plan?
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:
- The dementia caregiving journey can be as long as ten years;
- As the person with dementia loses memories and as personality traits change, the sense of loss can be acute for their caregiver and family members;
- On the other hand the person with dementia can live for many years beyond the time when their caregivers feels they are “gone”;
- Dementia can, in some cases, bring aggression, disinhibition and responsive behaviours into the mix, all very difficult to deal with;
- As a person moves into later stages of dementia they will lose their capacity to control their body, often meaning intensive physical care being required;
- Dementia causes significant disruptions in sleep and frequently night-time sleeplessness and/or wandering behaviour which in turn robs the caregiver of their much needed sleep.
- Since many people with dementia are seniors and since spouses are the most common of all caregivers, dementia caregiving is often being carried out by a frail senior or older person with, or at risk of, their own health challenges.
“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:
- Feeling overwhelmed, ineffective
- Irritability and a feeling of less self-control
- Loss of appetite
- Forgetfulness or other cognitive impairment
- Social isolation – changes in how you socialize
- Hypervigilance – the inability to turn off
- Increase in “negative”, self-harming behaviours; misusing food, alcohol, cigarettes, drugs, shopping, computer games/tv
- Reduced capacity to feel joy, express emotion or have peace
- Physical symptoms including headaches, dizziness, belly pain, heart palpitations, chest pain.
Managing you stress:
- Know your strengths and limitations. Try and 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 all you can
- Ask for and accept help
- Find out about local community support services and how to access their programs
- Talk to others who are going through similar circumstances.
- Give yourself a break
- Communicate constructively
- Take care of yourself.
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:
- I am doing the best I can.
- There are some things I cannot control.
- It is the disease that causes behaviours to happen. Not my caregiving.
- I will enjoy the peaceful moments we share together.
- I will ask for help when things get out of control.
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: