Holidays can be meaningful, enriching times for both the person living with dementia (PlwD) and the whole family. Maintaining family rituals and traditions helps all family members feel a sense of belonging and family identity. However, some of these can be difficult for anyone with sight or sound sensitivities. Some can be confusing for a person who needs continuity and sameness to feel safe. And some can even be frightening for the person who feels lost in all the temporary changes.
As for care partners, your already heavy load may get heavier when you add holiday chores like sending out cards and hosting family visitors. How do you balance it all? How can you keep the feeling of tradition and family but save your own sanity and protect the PlwD as well?
Here are some hints for helping you celebrate the holidays that are important to you and include the PlwD as much as possible, using EASEE (encourage, simplify, adapt, explain and enjoy).
Encourage: Encourage friends and family to visit even if it’s difficult. Being social is an important part of dementia care, for both the PlwD and for you.
Adapt: You may not be able to do things you've always done the way you've always done them. Choose alternatives, such as asking family to stay elsewhere while they visit, or dinner out instead of a big family meal at home.
Simplify: Set limits so that you aren't overworked and the PlwD isn't overwhelmed. Limit the number of visitors at any one time, or have a few people visit quietly with the PlwD in a separate room.
Explain: Be clear about what your limits are, what you can and can't do, and what works best with the PlwD. This is especially important with visitors who haven't seen the PlwD for a while, or have only seen the PlwD during a LBD Showtime, where they appeared much more able than they usually are.
Enjoy: Give yourself time and permission to relax and enjoy your visitors. Remember the less stress you have the less stress the PlwD will feel. Make sure the PlwD has a quiet space to escape to when they get overstimulated.
Encourage: Encourage the PlwD to participate in the preparations, which will foster valuable feelings of usefulness and togetherness. Even when they can't help, observing will familiarize them with the upcoming festivities.
Adapt: Change your usual preparations to be less work intensive. For example, instead of decorating a tree, hang a knitted or macraméd tree on the wall or scatter a few decorations on tables and shelves.
Simplify: Limit what you do. Not only will your workload be less, but the PlwD will be able to participate more. How much cooking do you really need to do? Which tasks, such as sending cards can be limited or deleted?
Explain: When it isn't possible for your PlwD to participate in the preparation, just observing as you talk about what you are doing and what it means to you will help to familiarize them with the upcoming festivities. To help the PlwD recognize an expected guest, begin showing a photo of a guest week before arrival. Each day, explain who the visitor is while showing the photo. To help a visitor know what to expect from the PlwD, arrange a phone call between the visitor and the PlwD. This is also another opportunity for the PlwD to become familiar with the visitor.
Enjoy: Focus on the joy of the season and take time to truly enjoy it. Help your PlwD to feel the fun of anticipation, the togetherness with friends and family, and to reminisce about past times. Include quiet distractions such as a family photo album for times when the PlwD feels upset, anxious or just needs a break.
Encourage: Encourage yourself! If you are invited to celebrations that the PlwD cannot attend, go yourself. Ask a friend or family member to spend time with the person while you’re out.
Adapt: Chose activities for the PlwD where there is less likelihood of loud conversations or other loud noises. Adjust your lighting so that it isn't too bright or too dark. Replace rich foods with healthier ones and limit alcohol.
Simplify: Limit the number of activities, choose those with smaller groups and avoid crowds.
Explain: When in a group of people who have not been around your PlwD at all or later, you may need to explain about the disease what they might expect, such as the PlwD being unable to know what is expected or acceptable. Warn people that the disease may have taken away the PlwD's ability to know them but that the PlwD can enjoy their company anyway. Unwarned, it can be quite painful to discover that a once loving relative doesn't recognize you.
Enjoy: To help the PlwD the enjoy holidays and holiday visitors, keep the PlwD's routine as close to normal as possible and make sure they get plenty of rest. To help you enjoy the time, keep your own stress down with plenty of sleep and self care.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.