Sharing the Holidays with a Loved One with Dementia | By Guest Author Dr. Rosie Curiel Cid, Assistant Professor and Neuropsychologist, Department of Psychiatry and Behavioral Sciences heerful anticipation, joy and gratitude are marked emotions as the “most wonderful time of the year” approaches. Even between the rustle and bustle of the season, many experience highly positive sentiments as they anticipate festivities with family and friends. Families and care partners of a person with dementia, however, may experience heightened stress levels and a more complex array of emotions including compounded feelings of sadness and emotional loss. The holidays have a way of underscoring a sense of nostalgia over changes or recognition of losses that have ensued throughout the years. This is especially true if a loved one affected by dementia is unable to fulfill their traditional role within the family, has had a notable change in personality, or seems less engaged in customary activities. While many individuals with early-stage dementia are well able to travel and maximally enjoy the holidays, persons with more moderate levels of dementia may be vulnerable to feeling overwhelmed by the sensory overload that is commonplace during the holiday season. They may experience moments of confusion and usually need greater assistance to manage holiday stress and stay safe and organized if traveling. So often, the spouses and children of persons affected by more profound dementia have to extend an extraordinary effort to maintain traditions while trying to keep a stabilized environment for their loved one. Over time, that great effort may lead to exhaustion and generally be less possible. For example, it may be difficult to explain to family members or friends who do not have regular contact that observed behavioral changes such as repetition, impulsivity, disinhibition or reclusiveness are part of the illness. In addition, greater needs for supervision and care may lead care partners to miss holiday activities; so resentment, guilt, and feelings of isolation are not uncommon. It may be helpful for a loved one living with dementia to have the assistance of care partners that can facilitate their active participation in the holiday
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activities that bring them fulfillment by making some adjustments. For example, if gift giving is important, avoiding large shopping mall crowds and ordering gifts through catalogs or online makes this activity possible from the comfort and safety of their own home. Sharing old photos and fun family memories, or making traditional family dishes may be a nice way to engage a loved one with dementia in the celebration. For individuals who are directly providing care, travel outside the home or care facility may not possible. Families can be supportive by focusing on the activities that bring happiness and peace for the care partner and affected loved one with more advanced illness. Letting go of expectations can help make the holidays less overwhelming and less stressful. Families can make these adjustments by asking someone else to host the celebration, simplifying the meal, or changing the time of the meal to earlier in the day to minimize evening confusion. Developing new and simplified traditions, such as watching holiday movies or singing holiday songs may be a better fit with caregiving responsibilities. It may also be helpful to familiarize children with what they may expect to encounter if they are visiting a grandparent who has significant dementia. Informing children that it is possible that their grandmother or grandfather may confuse them or not recognize them because they can be
forgetful from time-to-time can usually help reduce moments of discomfort. Persons with dementia and the people who love them may find themselves faced with the opportunity to redefine how they wish to experience meaning during the holidays. It is okay to put feelings and comfort before traditions and it’s okay to decline participating in activities that may take you away from what is most important for you during the holiday season. It is also okay to seek expert respite care if you need to. Being compassionate with and embracing you and your loved one’s new needs may be one of the greatest and most meaningful gifts you can share. Spending time with loved ones: Ivan Curiel offering a final toast with his daughter, Rosie Curiel Cid. Christmas Eve 2017.
