Family caregivers and people with dementia or Alzheimer's disease are at risk for increased stress during the holidays – but holiday visits can be a joyous time with adjusted expectations and careful planning.
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 – offers the following advice.
How should families approach traditional holiday gatherings?
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?
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 aimlessly walking around the house, needing assistance in using the bathroom or having difficulties when eating.
How should families celebrate with loved ones in a care facility?
Although we may want our family member to be home for these special days, sometimes it can be very upsetting for them to transition from the care facility to home and then back again. Bring the gathering to your loved one. Many facilities have family meeting rooms where you can plan your own celebration.
How should family members initially approach a loved one with dementia?
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.
What are the best ways family members can spend quality time with a loved one during a visit?
Bring a bag of tricks: snacks, coloring books, crafts, photographs or 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 may be preserved in a beautiful way.
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.
What can you give to someone with memory issues and their caregivers?
Try practical and useful gifts, such as identification bracelets, easy-to-remove clothing or favorite music. Caregivers usually appreciate anything that makes their life easier, such as gift cards for take-out food or a promise to help with a project around the home that they haven't been able to tackle. You can offer to stay with the person so the caregiver can attend a family gathering or take time for him or herself. Extend the 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.