Preparing for life as a caregiver for loved ones with dementia

There is currently no cure for Alzheimer’s or dementia; if you are preparing for life as a caregiver for a loved one with either, it can be overwhelming to think of the next few steps. Doctor’s appointments, medical bills, and quality care of your loved one are all matters of concern, and they can be quite difficult to manage on top of your own responsibilities and commitments. However, the quality of life for a loved one who is beginning to develop Alzheimer’s or Dementia depends heavily on their surrounding environment. To make the emotional process of caregiving more doable, it’s important to get things organized now. Here are tips on how to do just that.

Early Stage

In early stages of Alzheimer’s or Dementia, the main focus that you and your loved one should have is accepting, educating, and obtaining.

Accept the diagnosis, grieve, but also take the necessary steps to ensure early intervention and good quality of care.

Educate your loved one and yourself on what Alzheimer’s or Dementia is actually like, how it develops, and how you can communicate with each other as time goes on. Keeping consistent communication with a doctor, attending workshops, and reading Alzheimer’s/Dementia research can increase familiarity with this cognitive disease.

Obtain the necessary resources in terms of community support, caregiving training, financial support, future housing, necessary paperwork, and other help. Maybe even start thinking about how to make your home physically safer for your loved one (handrails for stairs, carpet, good lighting).

Thinking of future plans now will greatly reduce stress and frustration in the future. Keep in mind to keep communication open with your loved one throughout all these processes, as they still are independent in life decisions and such. Your role might be to remind them of certain appointments, lay out clothes, assist in meal decisions, but listen to what they are feeling and wanting (especially concerning their choice of care later in life). 

Middle Stage

With increasing progression of your loved one’s Alzheimer’s or dementia, caregiving can become even more emotionally taxing as they can forget familiar faces, settings, and habits. Your role as a caregiver is to keep giving your support and love; however, this notion can be extremely difficult to carry out in real life. Seek the necessary help you need when you need it, including delegating tasks to other family members or looking into adult day care or respite care.

Keep your day to day with your loved one structured and involved; despite changes in communication, keeping your loved one close by doing familiar activities can do wonders for quality of life and care. Exercising, dancing, and trying healthy foods can all be activities that are both beneficial and necessary for your loved one. If they seem to lack interest in anything, be patient but also initiate new activities for them. And know that you are doing the best you can; in the end, that is all that matters. 

Late Stage

At this point in your loved one’s development of Alzheimer’s or dementia, they will probably need extensive care that you cannot provide. Not only does it become difficult to take care of your loved one but also dangerous to patients that are now vulnerable to falling, difficulty eating, infections, and more.

In the end, the decision is mostly up to you; however, do not let a feeling of failure as a caregiver inhibit you from allowing your loved one to receive proper care. Accept what the best decision for both you and your loved one is; if bathing, dressing, and feeding are not activities that you are capable of doing often, consider seeking out hospice care or nursing home care as well. That way, you can focus on purely being there for your loved one through activities or spending quality time together rather than worrying about if they’re taking the proper medications, if they have eaten, etc.

There are many resources available online to see what care options are available for your loved one; even if you decide on taking care of your loved one yourself, there are multiple training guides and support groups to assist your caregiving journey. 

Caregiving requires time, patience, and organization. Be realistic about what you can give and give yourself breaks when needed. Start discussions early and keep them consistent. You are not alone, and you are capable.

— Jenny Kim