The holidays can be an especially challenging time for family caregivers of people with dementia or Alzheimer's disease. To help families navigate holiday visits, Rutgers Today spoke with Mary Catherine Lundquist, program director of Care2Caregivers, a peer counseling helpline (800-424-2494) for caregivers of people with dementia and Alzheimer's disease operated by Rutgers University Behavioral Health Care.
How should families approach traditional holiday gatherings?
Lundquist: If you have a family member with memory loss, the best thing you can do is adjust your expectations. There are so many changes and challenges with Alzheimer's disease that the key to success at the holidays is being flexible and creative.
Adult children who have one parent with dementia and the other as the caregiver should consider what is in the best interest of each parent when planning events. For example, while children might long to visit their parents with their families on one special day for the sake of tradition, that might be the last thing the caregiver desires. Mom might have been up all night caring for Dad and the house might be disorderly because she is too busy to clean.
Structure and routine are important for a person with dementia. If there is any change - like attending a gathering at another home - he or she could be out of sorts for the next few days, adding stress to the caregiver. Sometimes, it's best for the loved one to stay at home and receive visits of 30 minutes or less from a small number of guests stretched out over a period of days. Keep the number of guests to a minimum; sometimes even having two extra people in the room can be too much stimulation.
How can caregivers prepare traveling family members for the changes in their loved one?
Lundquist: Talk with your out-of-town family beforehand and let them know that their loved one may be different than last year so they are not shocked by changes. Be specific. Say, for example, 'He's not talking a lot' or 'She may ask the same questions over and over again' or 'He may not know who you are.' Discuss some behaviors they might witness, such as walking around the house, needing assistance in using the bathroom or being messy when eating.
What are the best ways family members can spend quality time with a loved one during a visit?
Lundquist: Holidays can be sad times for families dealing with memory loss because they realize things and people are not as they used to be. However, that doesn't mean we can't appreciate the time we have together and make new connections and memories.
When visiting someone with memory loss, bring a bag of tricks: snacks, coloring books, crafts, photographs, memorabilia. There are so many ways we can connect with each other even when a person can no longer talk or remember a shared history. Music - especially singing songs together - is a wonderful way to share an experience. Although people lose the ability to converse, their ability to sing is preserved in a beautiful way. Plus, the holidays present a roster of familiar carols.
Tactile projects, such as coloring or making cookies, are other ways to enjoy time together. Engage loved ones in ways that match their abilities: Perhaps they can hold a bowl or roll dough. It's even meaningful if they simply sit at the table while others perform the tasks. You also can look at holiday cards together and use the visuals to make small talk.
People with dementia may lose their ability to have a conversation. Guests and caregivers can converse, but should make the loved one feel included even if they don't respond. Don't shy away from reminiscing as that can be a comfort to the caregiver. However, refrain from asking the loved one 'Do you remember?' or expecting them to give you details from the past. It's also good to remind the loved one of your name and your relationship to them from time to time.
How should family members initially approach a loved one with dementia?
Lundquist: Enter the room slowly and offer your hand respectfully. Wait for the loved one to take it and respect them if they do not. Introduce yourself by name and relationship. Never ask "Do you know who I am?" If you want to hug them, lean in slowly and read their cues. If they get tense or back up, they are not comfortable. Realize that people who never wanted to be touched may suddenly be interested in holding your hand all the time - and vice versa. Read their cues and be open.
How can family members reduce the stress of caregiving during the holiday?
Lundquist: It's very isolating to be a caregiver, especially as the illness progresses. Caregivers often do not get out and are lonely - a situation that is compounded by being at home all day with a person who is unable to engage with them. Whatever you can do to brighten their day is appreciated, whether it's bringing them a meal or, better yet, offering to stay with the person so the caregiver can attend a family gathering or take time for him or herself.
Extend this gift of yourself throughout the year. If you're an adult child of someone with dementia, offer to stay with a parent each weekend for a few hours to provide relief to a caregiving parent or sibling.