Choosing joy during the holidays when your loved one has dementia

Holidays are often a time when families come together, whether it’s for sharing food, gathering for parties or opening presents. However, when you have a parent or loved one with dementia, the holidays can become even more stressful, and it can feel like joy is more difficult to achieve

Diana Jahries, a memory health social worker with the Center for Success in Aging, offered a few tips on how to make the most of the holidays when your loved one has dementia.

Noticing signs of dementia when you visit? You’re not alone

When families don’t live close to each other or just aren’t able to get together that often, the little things that seem ‘off’ during a phone call can suddenly become clear signs that you’re looking at something more significant than a ‘senior moment’ or just a bad day.

Most people with dementia are unaware of their symptoms, at least initially. Signs of dementia might include:

• Repeating the same stories
• Trouble remembering names, dates or appointments
• Changes in mood and personality
• Struggling to find words during a conversation
• Asking questions repeatedly that you have already answered
• New difficulties in performing familiar tasks, such as driving, managing finances, cooking or taking their medications
• Increased worry and fear that doesn’t seem to have a cause
• Lack of interest or motivation, which can seem like being ‘lazy’ on the surface

“If you notice these signs of dementia in your parent or loved one, encourage and help them to seek out an assessment of what may be going on,” said Jahries. “A diagnosis of Alzheimer’s disease or dementia is the start of a journey, not the end of one. Early diagnosis allows for looking at all potential treatment options and making plans. It also can provide the opportunity for the diagnosed person to participate in decisions.”

But what about after the diagnosis, and you’re struggling to find joy in the holidays when you feel like you’re watching your loved one fade away?

Keep things simple and sweet

“One of the first tips I give to family members looking for ways to keep the holidays comfortable and happy when you have a loved one with dementia is to simplify,” said Jahries. “Don’t set up an action-packed schedule. Keep decorations, expectations and schedules simple.”

For someone already struggling with the anxiety and stress that can come with dementia, knowing the ‘plan’ for the evening is to drive around looking at Christmas lights while sipping hot chocolate may feel much less overwhelming than a day spent in crowded stores shopping for gifts, wrapping, decorating or inviting people over, but it still involves that holiday magic.

Keep a quiet space for calming down

“Holidays can be overstimulating for everyone, not just dementia patients,” said Jahries. “But people with dementia may struggle to be able to express that overstimulation and overwhelm, and having a quiet, calm space to retreat to allows them to regulate their emotions and take a break.”

This space could be an extra sitting room, a guest bedroom, or their own room in their own house. Just make sure everyone knows the ‘calming down space’ is off-limits to anyone that your loved one doesn’t expressly want in there with them.

The earlier the celebration, the better

“There’s a common name for problems that dementia patients often show in the evenings, called ‘sundowning,’” said Jahries. “Sundowning is an ongoing state of confusion, anxiety or agitation that usually starts in the late afternoon and can go through the evening. Some people may wander or pace when sundowning, too.”

Setting celebrations for earlier in the day can make things far more comfortable for your loved one. An early lunch at 11:30 a.m. with a little time spent with family means they’ll be home that much earlier, back in a familiar and less stressful space.

Name tags can make all the difference

“Some people resist the idea of their loved one forgetting their name, but people with dementia cannot control what they remember or forget,” said Jahries. “Name tags on everyone can help your loved one to feel less embarrassed if they forget a name, since it’s right there to remind them. Another simple measure is to request people introduce themselves in the event reading is a lost ability.”

It’s all about keeping everyone comfortable and setting up the best possible experience for holiday fun.

What to do when interacting with a loved one with dementia

“Dementia is often distressing for friends and family as well as for the patient,” said Jahries. “Keep in mind that for many dementia patients, even if they forget your name, they still remember how you make them feel. Don’t sweat the small stuff and instead focus on the joys you can still share.”

Jahries offered the following tips for interacting with a loved one with dementia during the holidays:

• Understand that they may not remember your name or how they know you. Don’t be offended! Just identify yourself and be prepared to do so more than once.
• Don’t try to ‘jog’ their memory with ‘don’t you remember…?’ questions. This can be very upsetting.
• Speak a little more slowly, as they may need more processing time to take in your words.
• Give them a little more time after you finish speaking to form a reply.
• Avoid correcting them. Feelings matter far more than facts.

Jahries’ final piece of advice?

“A warm smile and a gentle touch go a long way!”

For additional holiday tips or for more information on caring for someone with dementia, signs of dementia and more, check out our dementia category here on Flourish.