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Younger-Onset AD or Other Dementia
Home for the holidays? A guide for involving loved ones with memory impairment
Consider: Overstimulation. Parties tend to produce lots of “white noise,” which can be challenging for a person with dementia to tune out. Even discussion groups traditionally considered small (four-five people) can become over-stimulating for a person who requires extra time and concentration to follow the thread of conversation. Additionally, the person living with dementia can often experience a sense of added pressure to make small talk or answer challenging questions from well-intentioned guests who may not fully understand the brain change that's occurring. This can bring on stress and anxiety -- which drain cognitive resources and energy.
Check the venue. It may not be possible to limit the guest list, so consider setting up a quiet space for your loved one to entertain small groups, enjoy one-to-one conversations, or even just experience some down time. It can be important to take a moment (or moments) away from the hustle and bustle of the party to gather thoughts and rejuvenate.Also, take note of whether physical comforts like bathrooms are available, identifiable, and accessible. Navigating a new space can be confusing, and physical comfort is important so that the person living with dementia can focus on interacting and enjoying!
Connect with your guests to bring awareness. The holidays tend to bring folks together from near and far; so these guests may be visiting your family member for the first time in a long time. Whether this is the case or whether they are fixtures in your daily life, having an update about what to expect and suggestions for how to connect can bring comfort and empowerment to anybody.
Our tendency in social situations is to rely on “chit chat” questions to fill the silence. These types of questions are not always the most effective for individuals with dementia, as they rely on declarative and episodic memory. Consider including a letter to guests with your invitation. In the letter, you can include updates on your loved one’s latest progress and suggestions for questions and topics you know will be a hit. Click here for an example we’ve outlined. Preparation letters can set everybody up for success.
Keep consistency. If your loved one living with dementia has been resting each afternoon at 2:00 pm, now is not the time to change the routine. As mentioned above, the individual living with dementia is rising to the occasion for this event simply by adapting to a new environment and a new group of people. What are some creative ways to support your loved one’s routine while still fostering involvement? In the case of the individual resting at 2:00 pm, a family might take an opportunity to celebrate the festivities with brunch, so their loved one can head home on time. Having the flexibility to adjust your routine to honor your loved one can set everyone up for a more successful celebration.Have a “comfort kit” and an “engagement kit.” Things happen! Having the supplies to respond appropriately and efficiently can make all of the difference. Work with your loved one and his or her care team to create a kit of supplies. Be sure to include items for freshening up, adaptive equipment, medications, etc. You may also want to bring your loved one’s health care papers and a current picture. These are always good to have on hand. And don’t forget the crossword book, music listening device or poetry book that can help to pass the time as well. Opportunities for quiet stimulation can bring comfort too. Feel free to add this Festivals of Light book to your engagement kit. Preparing these supplies in advance can minimize stress on the day of the festivities. (A side note: allow the care team to contribute. They may have helpful ideas to share and will be happy to do so).
Consider: Connecting with children. Keep in mind, individuals living with dementia may have challenges connecting with children as a result of overstimulation. Children, in their excitement about the holidays, can move quickly or become noisy. This can, in turn, lead to agitation from the individual living with dementia.Suggestions:
Stick with focused activities for short periods of time. Challenging a child to focus on an activity alongside the individual living with dementia can afford a controlled opportunity for connection. Montessori-inspired activities are a great way to engage across the generations. Additional seasonal suggestions include making a holiday gingerbread house, spinning the dreidel, singing carols, reading a book together, or watching holiday film clips.
Limit the number of children involved at one time. Much like limiting the number of adults in an exchange, limiting the number of children can empower the individual living with dementia to better concentrate on the conversation or task at hand. This can help to minimize frustrations.
Emphasize “inside voice.” Simplifying instructions to the child by emphasizing “inside voice” can have a huge impact on an interaction. Children may not understand the expectations surrounding communication with the person living with dementia. This is a quick and easy way to make a familiar point with good results!
Consider: Accepting Help and Support
It is important that we are honest with ourselves to accept help and share with others how they can help most effectively. Many families and friends don’t know where to begin, so being open about the support you need will empower everyone.
Consider asking a loved one to create a Family and Friends Album or name tags – for everybody! It can be embarrassing to forget the name of an old acquaintance. Couldn’t we all benefit from some support in social situations? Incorporating name tags or place cards into the party is a simple way to alleviate stress for your loved one living with memory impairment – and probably for other guests too! Click here for some festive options (these can become a craft for loved ones to do together).
By the same token, if there’s time, putting together a look-book of family names and faces can provide an opportunity for reminiscence and study. A family member can work side-by-side with your loved one to paste a photo and a few lines about each guest in an album. Your loved one can hold it as a reference book to provide comfort and security leading up to the party and beyond. You don’t have to be the one to lead this charge. Arrange for a family conference call and ask if there is a family or friend that can step-up to support the creation of the look-book. This is a great project to complete with a teen-aged child or grandchild.
Get support. There are some incredible agencies out there, helping families to navigate through the challenges of cognitive impairment. Many offer support groups (online, by phone, and in person), in addition to education and guidance from social workers and other industry professionals. Some of our favorite offerings involve complimentary programs designed for individuals living with dementia and their care partners to attend together. These may be at local museums, dance studios, activity centers, or even Lincoln Center! Check out The Alzheimer's Foundation of America, NYU ADRD and Family Support Program, and CaringKind websites for more information and resources.Be open to new traditions. If a long dinner will be a challenge for your loved one to sit through, or your family home is not accessible to a new walker or wheelchair, try to open your heart to a new experience. The brunch mentioned above offers the opportunity for sweeter foods (many of which can be easily picked up and eaten), a quieter venue, and an earlier meeting time (helpful for those who may be tired later in the day). If your loved one is in a facility, taking the kids to visit and join or volunteer in a program may bring warmth in ways you didn’t expect.
Create opportunities to contribute. Helping to prepare for the big day can promote your loved one’s esteem, anchor him or her to the season, and provide you with some support – a “win-win.” Invite according to your loved one’s strengths. For those who have good dexterity, rolling silverware or folding napkins, stringing popcorn, polishing silver, wrapping gifts, and making a simple appetizer or dessert can all be helpful contributions to the cause. Click here for an adapted recipe. Individuals with the strength of reading may enjoy giving a toast or blessing at the meal, or reading a holiday poem or story aloud for the party to enjoy. Click here for some simple toasts or cues to support your loved one with creating something original. And those who are musically inclined might take pride in practicing a song for the occasion. Pause for a moment and focus on what works; explore your ideas with your loved one to see what he or she might be most motivated to share. And don’t be afraid to be creative!
Honor the individual. This is an opportunity for the family to honor the contributions and legacy of the individual living with dementia. Be sure to include your loved one in this conversation, addressing him or her directly. What fond memories of him or her do you have to share? Which of his or her old recipes have been passed onto the next generation to prepare and enjoy at the party? What are the differences he or she has made over the years? Click here for a sample, “How You’ve Inspired Me.” These are questions that the family can use to guide the process of honoring a loved one. Members can fill out the form and create a book or read the forms aloud to the individual at the party. Remember, spread around opportunities for the support you need. There may be someone in the family who would love to lead this project.
Pausing to show your gratitude and respect can help to build the esteem of the individual in the present, and what could be a better gift this season?
This is truly an awesome guide; thank you very much llee.