Caring for a loved one with Alzheimer’s disease or other dementia is a 24-hour-a-day job. There is no clocking in or clocking out of this difficult and overwhelming endeavor. As a neuropsychologist working with dementia patients and their families, I am constantly amazed at the ingenuity, compassion, patience, and love that I see amongst family members caring for a loved one who has dementia (also known as a decline in thinking skills, daily living skills, and/or change in personality).
Holidays pose a unique challenge for caregivers and patients with dementia. The change in routine, traveling to a new location, having overnight guests, and getting together with friends and family that you may not have seen for some time, can cause additional stress or worsening of dementia symptoms. Here are some helpful tips to ease the stress around this potentially happy but also uniquely stressful time:
- Decide ahead of time which get togethers will be enjoyable for your loved one with dementia, and which ones might cause stress or worsening of symptoms. Is the gathering too large? Will your loved one be left alone to converse without backup? Will they need to stay up too late, which may cause a worsening of their symptoms? Is there a quiet space to rest if they become overstimulated? Consider these factors in advance and make decisions accordingly. Don’t worry about pleasing everyone in your family. Decide what’s best for you and your loved one. You may need to do things differently this holiday season due to your changing circumstances, and that is okay.
- Prior to attending a gathering, review who is going to be there, what their names are, and how they are related to your family. Practice names, write them down, and keep this information visible during the days leading up the gathering. During early stages of dementia or Mild Cognitive Impairment, these techniques can help your loved one feel more confident during social gatherings.
- Adjust your expectations about your loved one’s participation at parties and family gatherings. They may not participate in conversations as much as they used to, but that doesn’t mean they don’t enjoy being in the room and experiencing togetherness. They may not express their emotions in the same way that they used to, but that doesn’t mean they are not experiencing joy and contentment on the inside. Conversely, be sensitive to their sometimes rapid and sudden changes in mood, and make last adjustments to a situation as needed.
- Due to the COVID-19 pandemic, holiday gatherings may need to be adjusted, or virtual gatherings may happen instead. Keep virtual gatherings short and with only a few people. Too many people talking on a screen can become confusing and overstimulating.
- Involve your loved one in simple holiday preparations. If they used to make a five-course meal for the family, ask them if you can now be their assistant chef, or ask them to explain to you how they like to do things. Feeling needed and helpful is an important human experience that doesn’t go away, even when someone has dementia.
- It’s okay to put yourself first sometimes. If your loved one with dementia cannot attend an event, consider going by yourself. Ask a trusted friend to come over and spend time with your loved one so that you can attend the event. Any stress caused by this temporary separation will likely be short-lived and cause no permanent damage.
- Remind yourself that you are doing a good job and get help when you need it. There is no guidebook on how to be a caregiver for your spouse, your parent, or other loved one who has dementia. Sometimes you will make a mistake or wish you had done something differently. Sometimes you will worry that you are not doing everything right or that you could be doing more. Sometimes you will feel stressed and unhappy with this new role. Remember that you are not alone. There are many resources out there for caregivers. If you live in New Jersey, access resources through www.alz.org/nj.
Dr. Ashley Gorman is a board-certified neuropsychologist specializing in adolescents and adults. She works closely with patients, their families, medical providers, and/or academic institutions in order to assist in making an accurate diagnosis and formulating an appropriate treatment plan.
