How Keeping a Journal Helps Dementia Caregivers

Caring for a loved one with dementia presents unique challenges that can be overwhelming. It means coping not just with the loved one’s illness and the huge life changes that will come, but with the caregiver’s own feelings and struggles too.

Keeping a detailed journal is an organised way to record the progress and effects of the patient’s dementia—helpful information for their doctors. But it can also provide emotional and psychological benefits for caregivers themselves.

Whether you are caring for someone with dementia or another illness, here are some things to consider when keeping a journal.

What To Track in Your Journal

Why record what the dementia patient is experiencing? Two reasons: because it will help their doctors and because it will help the caregiver understand and adapt to the effects of the disease.

• Daily activities and behaviors: Note any changes in mood, unusual behaviors, or shifts in routine. This can help identify triggers for agitation or anxiety and reveal patterns or changes over time.
• Medications and side effects: Record the times and doses of medications. If their medications change, note any side effects or noticeable changes in the person’s condition. This can be crucial for managing the drugs’ effectiveness and any potential drug interactions.
• Eating and drinking habits: What and how much is your loved one eating and drinking? Tracking this information can help prevent malnutrition and dehydration, which are common issues in people with dementia.
• Physical health and symptoms: Record any physical symptoms, such as coughs, changes in mobility, or signs of discomfort. This information can be vital for detecting emerging health issues that may not be directly related to dementia.
• Sleep patterns: How much and how well are they sleeping? Do they wake up during the night? Sleep disturbances can exacerbate the symptoms of dementia and affect the health of both the caregiver and the patient
• Falls: Research shows that falls are not only more common among people with dementia, but they can also accelerate cognitive decline. Details about any falls—where, when, and how they occurred—are important information for the doctors.

Journaling: A Safe Space and a Helpful Tool

Keeping a journal helps the caregiver process the complex emotions they are likely experiencing. A journal is a private, safe space where the caregiver can express frustrations, celebrate successes, and acknowledge hardships. Journaling can help them protect their mental health stability, which in turn can help them feel better able to support their loved one effectively.

A journal can also be a place for the caregiver to track the effectiveness of care strategies and treatments. For example, the caregiver may notice that the timing of dinner is causing their loved one distress. Their notes can help them adjust their caregiving as needed.

The caregiver may even decide to keep two separate journals—one for themselves and the other journal (or calendar) about their loved one’s condition.

“There is something about recording what is happening to us and our emotional reactions that enables family caregivers to stand apart from the onrush of tasks and crises they’re immersed in”, said Barry J. Jacobs in an article for AARP. A caregiver himself, Jacobs noted that journaling can help the writer “feel more in control”.

How the Journal Can Help Doctors

A detailed journal is a valuable resource during medical appointments. It provides data and examples that help doctors understand the patient’s current state beyond what a memory recall or a short visit can reveal. This is crucial in diagnosing issues, adjusting medications, or changing treatment plans.

Doctors rely on accurate, detailed information to make informed decisions about treatments and care strategies. For example, if the journal shows that the patient has fallen repeatedly, the doctor may use that information to assess the patient’s need for mobility aids, physical therapy, or further neurological evaluation. The doctor may end up identifying a treatable condition, such as an inner ear disorder or vision problems.

Moreover, the journal can help identify early signs of complications or side effects of medications that the patient might not be able to express because of their cognitive condition. This helps the doctor make a change before the complications cause a potentially serious health issue.

Write for Them and for Yourself

Keeping a journal is a simple yet effective tool that can greatly improve the caregiving experience for those managing the care of someone with dementia. You will help not just your loved one, but yourself as well. Do it in whatever way works best for you. “This is not a school assignment”, Jacobs reminds other caregivers. “No one is grading you. Just empty the contents of your mind without judging yourself”.

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