Your role as a caregiver changes with the progression of your loved one’s condition. Below summarises the caregiving experience through the different stages of dementia:1-3
Caregiving Through the Stages of Dementia
Your loved one has recently been diagnosed with dementia, and you may feel that you are suddenly performing a new, unfamiliar role as a caregiver. You may be overwhelmed with emotions. This is normal.
You may experience or feel:
• Denial about the diagnosis;
• Lost about where to search for information and professional help related to dementia;
• Stress and Anxiety due to the uncertainty about the future as the condition progresses;
• Fear and worry about your ability to support your loved one living with dementia; and
• Anger or Frustration with the loss of control over the future.
If your loved one is diagnosed with mild dementia, they can most likely be independent in most daily living activities, such as eating, showering and dressing, etc. They may still be able to drive and work.
However, they may require cues and reminders to help with memory to:
• Plan and organise matters
• Remember names
• Remember medical appointments
• Manage medications
• Manage finances
As a caregiver, you can:
• Support your loved one in maximising their independence in daily living activities for as long as possible. You can discuss and find a balance between interdependence and independence with your loved one. This can increase their confidence as well.
• Discuss and understand your loved one’s and your emotions together. Denial and fear are common in both caregivers and persons living with dementia.
• Continue to help your loved one live well. Though they are diagnosed with dementia, they will want to live well for as long as possible. Encourage them to remain physically and mentally healthy through exercises and balanced diets, and socially active and connected.
• Plan for the future together on financial and legal matters, and long-term care arrangements. A discussion with the rest of the family can be very helpful. Doing this can also help reduce your anxieties and worries regarding these matters.
• Take care of yourself. Caregiving for persons living with dementia is a long journey filled with ups and downs. It is important to first maintain your health and wellbeing in order to provide quality care to your loved one.
• Be empowered with information and resources. DementiaHub.SG provides resources and information that you may tap on to deepen your understanding of both dementia and of how to care for persons living with dementia. Take your time to explore this portal and visit it whenever the need arises.
It is likely that you are a seasoned caregiver with a few years of experience.
As your loved one living with moderate dementia requires increasing support in their daily living activities, exhibits changes in his behaviours and/or emotions, and experiences difficulties with communication, you will take on more responsibilities to support their well-being. This involves making decisions for them and providing physical care.
Dementia may gradually change the personality of your loved one to the point that you may start questioning if this is the same person you know and love. This could be difficult to accept, especially if you have had a special bond with them. At this point, remember that your loved one is still the same person despite all the challenges they now have in communicating and expressing themselves.
Though there will be challenging and tiring days, there will also be good days. Though it may or may not happen, there is a chance that your relationship with your loved one may improve and you might enjoy some parts of your caregiving journey.
As your loved one becomes more dependent on you for support and assistance, it becomes necessary for you to establish a structure and develop daily routines. At the same time, it is good to remain flexible and adjust these routines as their dementia continues to progress. Embrace your creativity as you generate and modify various strategies and ways to care for your loved one.
Caregiving responsibilities will grow more physically and/or emotionally demanding, so it is important that you focus on taking care of yourself too.
As your loved one’s dementia progresses to a more advanced stage, they will be totally dependent on you for their daily living activities. Additionally, they may be more vulnerable to infections, especially skin ulcers and pneumonia for having spent long hours in a wheelchair or bed.
Your loved one will require more intensive physical care around the clock, and you may require additional support and assistance at home.
Your loved one is approaching the end of his/her life. Dealing with loss is part of life. It is okay to feel sad when your loved one passes on. At the same time, while grief is a universal reaction to any form of loss, responses to it vary from person to person.
Although your loved one may spend a lot of time in bed or a wheelchair, and have difficulties communicating and expressing themself, they still have the ability to experience the world through their senses (sight, hearing, smell, taste and touch). You may engage them in activities which stimulate the senses. An example of one such activity is the Namaste Care programme.
You may also gather with family members and caregivers to discuss alternative care arrangements for your loved one to ensure they get the appropriate care that they needs.
If your grief continues for years and starts to interfere with your daily life, do not hesitate to see your doctor or visit a counsellor.
Below provides an overview of activities you may engage your loved one with at each stage of dementia, and the available resources and support one can tap on to ease the caregiving role:
- Alzheimer’s Association. (n.d.). Early-stage caregiving. https://www.alz.org/help-support/caregiving/stages-behaviors/early-stage
- Alzheimer’s Association. (n.d.). Middle-stage caregiving. https://www.alz.org/help-support/caregiving/stages-behaviors/middle-stage
- Alzheimer’s Association. (n.d.). Late-stage caregiving. https://www.alz.org/help-support/caregiving/stages-behaviors/late-stage