The holidays are supposed to be a time of joy and celebration, but we all know they can be stressful even under the best of circumstances. Add to the mix a relative with Alzheimer's Disease (AD) or dementia, and caregivers and family members can quickly become overwhelmed. The most stress, however, is likely to be felt by the person living with Alzheimer's, since travel, busy schedules, and overstimulation can contribute to a variety of symptoms. Psychiatrists at SUNY Downstate Medical Center specializing in Alzheimer's care recommend an inclusive, supportive approach to make the holidays a pleasant time for patients, caregivers, and family alike.
"A family member with Alzheimer's doesn't have to give up activities that he or she loves including participating in holiday celebrations," says Dr. Carl Cohen, Distinguished Service Professor and director, Division of Geriatric Psychiatry at SUNY Downstate Medical Center.
Because of the impairment in social cognition for persons with AD, "it's important to communicate feelings and attitude through a pleasant tone of voice and use positive, friendly facial expressions," Dr. Cohen says, including non-verbal cues such as a soft touch, kiss, pat, or a hug.
Dr. Cohen's work includes directing the Center of Excellence for Alzheimer's Disease at SUNY Downstate Medical Center, which serves a culturally and socioeconomically diverse community in Brooklyn and the New York City region.
Dr. Cohen recommends inviting patients to participate in the activities and festivities surrounding the holiday (for example, helping to decorate the home or prepare meals). Depending on the patient's ability and the progression of his or her condition, feeling involved and contributing to the celebration can be highly beneficial. Other activities might involve singing carols, unwrapping gifts, or playing simple games and puzzles.
"Activities can be modified to the person's ability," Dr. Cohen suggests, "with a focus on enjoyment rather than achievement. Involvement in activities could stimulate communication (verbal or nonverbal) and add to the person's quality of life."
Educating Family about AD
Experts also remind caregivers to be aware of signs of fatigue and overstimulation, as these can indicate that the patient needs a break from the activity.
"Be aware that the family member may get tired quickly or have difficulty seeing, hearing or wish to take a less active role in activities," Dr. Cohen says. "It is not unusual for persons with AD to become more agitated when they are in situations in which there is too much stimulation such as a large gathering of people or noisy situations with the television or loud music playing," Dr. Cohen added.
Dr. Cohen advises families to educate relatives who have less experience with their loved one's condition and the nature of the disease. "Emphasize that abnormal behaviors are part of the disease and many persons with AD lose ability to understand how others may feel and think," Dr. Cohen suggests.
"It is wise to educate other family members who have not recently seen the person with AD as to the nature and progression of the disease," Dr. Cohen says, "and that abnormal behaviors can accompany the disease such as agitation, suspiciousness, or inappropriate remarks."
And if an outburst or so-called "catastrophic reaction" occurs, Dr. Cohen recommends being aware of some red flags and strategies to cope with them. "If a person with AD tends to become agitated in the late afternoon (called "sundowning")," says Dr. Cohen, "it is best to keep them away from relatives during those times." Dr. Cohen adds, "if certain activities cause more agitation such as getting dressed or leaving the house, it is also best to try to negotiate when fewer people are present."
"Should a family member encounter an angry outburst, false accusations or beliefs, or hallucinations, they should be instructed in advance how best to deal with such behaviors," Dr. Cohen suggests. It is important, Cohen says, "to not contradict false beliefs or hallucinations, and to be supportive and sympathetic rather than confrontational."
"Sometimes agitation may reflect non-verbalized needs such as feeling pain, needing to go the bathroom, or feeling hungry or thirsty," Dr. Cohen says. "Family members might try to ascertain if such a need exists or speak to the person's caregiver who is more adept at interpreting such signals."
And if they do become agitated, Dr. Cohen recommends, "to redirect the person with AD to another topic or activity." Engaging with them in a sympathetic, compassionate way may benefit the patient and help them cope with their symptoms. Dr. Cohens advises, "although short-term memory may be impaired, most persons with AD retain more long-term memories; family members can engage in enjoyable discussions of events from the past or even singing songs or hymns that were learned many years ago. Moreover, persons with AD do not lose their need for emotional comfort, and a hug or holding hands is often very welcomed."
Gift Suggestions
Many families enjoy exchanging gifts during the holidays, but choosing suitable gifts for a loved one with Alzheimer's can be a challenge. Dr. Cohen recommends taking the patient's condition into account and giving gifts that can offer comfort, spark memories, or provide entertainment.
"It's most important when choosing a gift that caregivers have an idea of what the family member would like," Dr. Cohen says, and "every person should be treated as an individual."
Because patients with AD or dementia suffer from memory impairment, gifts that elicit personal, cultural, or family memories (for example, a digital picture frame preloaded with photos), can be a comforting option. Dr. Cohen says gifts that are, "specifically tailored for the family member may have a positive impact on individuals with Alzheimer's disease, bringing them back to good times."
"They may also increase stimulation and provide an opportunity to interact with family members, and help the family deal with the fact that their loved is slowly leaving this world," Dr. Cohen says. "It will provide an excellent opportunity for closure, maintaining memories, and cherishing great moments with their loved one."
Patients with AD or dementia can benefit from tactile stimulation; they may enjoy gifts that help them remain warm and comfortable, such as soft blankets and clothing. "Research shows a combination of sight, touch, hearing, and smell to be beneficial to AD patients. Even those in later stages," Dr. Cohen says.
AD and dementia affect cognition and memory as the disease progresses. Puzzles, memory games, and other activities that stimulate the patient's mind can be lasting and enjoyable gifts. "These items are appropriate for early stages of Alzheimer's and they help keep the person engaged and are fun. Some of the games and puzzles for young children can be played by persons in mid-stages of the disease," Dr. Cohen says. "Pay special attention to what the person enjoys. Take note when the person seems happy, anxious, distracted or irritable."
Dr. Cohen and his colleagues at SUNY Downstate Medical Center have provided this list of recommended gift ideas,based on their experience with patients and caregivers and advice from the Alzheimer's Association:
Personal memories
• Book in the mother tongue or childhood language of the family member
• Scrapbook with a family tree chart and family photos
• Digital picture frame preloaded with photos
• Personalized calendar with family photos to hang on the wall
Arts and activities
• Coloring books and coloring pencils for adults
• Audio Bible / Torah / hymns
• Old-fashioned manual turntable
Mental stimulation
• Tangle Fidget Toys and small memory games
• Day clock or a digital calendar
• Memory phone
Comfort and luxury
• Hand muff designed for therapeutic tactile stimulation
• Soft blanket with matching socks in a favorite color
• ·Stuffed animals or robotic animal toys
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