The holiday season is upon us. Depending on your perspective, this may be one of your favorite times of the year or your least favorite, or maybe somewhere in between. In general, though, most would agree that stress levels can go up during this time. And if you’re living with dementia or caring for someone who has it, the holidays can be even more stressful than usual.

The holidays can be busy and intense, and often entail traveling to places you may not get to very often, attending crowded gatherings like parties and worship services, seeing family and friends you may not have seen in a while, purchasing and giving gifts, preparing food items to contribute to a meal, or even hosting a gathering. Such activities can be stressful in and of themselves, but dementia can sometimes make them seem overwhelming and not worth doing.

Additionally, feelings of sadness, anxiety, and frustration can understandably arise as you realize how life has changed because of dementia. You might even decide to stop engaging in holiday events altogether.

But staying socially active is good for your brain (see previous blog post for maintaining brain health here) and your mood. The social, culinary, musical, spiritual, and other aspects of this time of year can be beneficial for everyone involved.

So, if celebrating the holidays is something you’ve done in the past, consider continuing to do so. Planning ahead and being realistic about what’s possible can make them meaningful, enjoyable, and less stressful.

Planning Ahead

• Think of ways the person who has dementia can continue to participate in holiday preparations, such as home decorating, signing and opening cards, helping with food preparation, picking out music to play, and reminiscing about past holidays and traditions, especially from their youth.
• If a get-together is planned, help manage the expectations of family and friends who will be there by giving them an update about what the person living with dementia and their caregiver are able to do and not able to do. This also includes being able to set limits and say “No” to requests, if needed (see Taking Care of Yourself below).
• A person who has dementia can sometimes become disoriented and anxious when visiting an unfamiliar place and/or when attending a gathering with people they don’t recognize. Holding a get-together in a place that’s comfortable for the person who has dementia and that doesn’t involve a lot of traveling can reduce their anxiety, as can celebrating with people they know.
• Related to this, aim for smaller groups of people so that the person who has dementia doesn’t feel overwhelmed.
• If needed, schedule getting together with others at a time of day when the person who has dementia tends to be less confused (such as morning and early afternoon) if this is an issue.

Getting Together with Others

• Introduce the person living with dementia to others, even family and friends, if needed. Wearing name tags can be helpful.
• Involve the person who has dementia in conversations as much as they feel comfortable.
• Show the person who has dementia where the restroom is if the gathering is at an unfamiliar location and accompany them to it if needed.
• Limit stimuli like loud music.
• Be prepared and bring your “activity toolkit” in case the person with dementia gets confused, anxious, or agitated. This can include topics of conversation they usually respond positively to or an album of photos they recognize and can talk about with you. You might also try asking them for help with something, listening to familiar music together, or anything else that engages them.

Taking Care of Yourself

• Just as it’s important to be able to say “Yes” to invitations to get together with others or requests to do things during the holidays, it’s also important to be able to say “No” if you’re not feeling up to it. You may not be able to host a party for 20, or go to 20 holiday parties, or bake 20 fruit cakes like you may have done in the past, but maybe there’s another way you can stay connected with others and engaged in activities.
• It’s also important to be able to ask for help if you have dementia or care for someone who does. Knowing your limits can help reduce stress. Family, friends, and even paid professionals like home health aides can help with cooking, shopping, and cleaning. They can also support the caregiver by staying with the person living with dementia while the caregiver does what they need to do to take care of their self.
• Another form of self-care is being able to talk about the stress you’re experiencing with a friend, your doctor, faith leader, geriatric care manager, or mental health professional. Iona offers care management services, individual counseling, and a variety of support groups for people affected by dementia.

Happy Holidays!

By Bill Amt, LICSW

Bill Amt, LICSW, is a licensed clinical social worker and is the Mental Health and Support Groups Program Manager at Iona Senior Services. As a psychotherapist he works with older adults and caregivers who are coping with the emotional challenges of aging, and he also leads support groups for caregivers and people diagnosed with early-stage dementia. He has a Master of Social Work degree from The Catholic University of America.

I have had a long career working intimately with people diagnosed with dementia and their family caregivers. It is a humbling lesson to see the stages of dementia from early diagnosed memory loss to near death.

As a past hospice nurse, I saw extreme frailty and utter exhaustion in patients and partners who were at the very end of the dementia journey.

When their physician finally recommended only comfort-based care or hospice care, the news often brought both grief and relief to families and patients. Now, as nurse care manager at Iona, I’ve become more aware of the agony of dementia. During consultations, I sit with family members and listen to their different interpretations of how the disease impacts the person they love. They each wait to hear from me, the clinical nurse, that it is not as bad as they think. They want to hear when relief will come, hoping to be awoken from the nightmare of this relentless and destructive disease. I see hope in their faces, their posture, and in their presence from just showing up for a consultation. If you’re a caregiver, I am sure that you can relate.

It is through these experiences that I have learned an important lesson.

The greatest relief for people with memory loss comes from community.

I’ve seen and still continue to see how the many points of human connection help awaken a person’s sense of self.

As the disease progresses, the brain becomes more impaired. There can be a loss of identity, loss of purpose, and even loss of joy. Sometimes, the person with dementia even forgets who they belong to within the context of personal relationships.

That is why trusting relationships are so important to a person with memory loss.

Having familiar caregivers, routines, and engaging events make life a bit sweeter.

I encourage caregivers to discuss and review memories that represent times of belonging with your person. Talk to them about family, friends, past employment, neighbors, faith communities, and other communities in your person’s life. In doing so, you can help remind and restore their sense of self.

There is a primal need in all of us, with or without memory loss, to be part of an authentic community. Especially for folks with cognitive impairment or memory loss, there is a need to be accepted and welcomed. I believe that creating friendly community is therapeutic beyond measure. It is really the most healing balm that we can offer as caregivers, family members, and professionals. Community is how we help those with memory loss know they are valued and supported.

By Dixcy Bosley

Dixcy joined the Iona Care Management team in 2018. She’s spent the last 30+ years developing wellness programs, raising a family, caring for her own aging parents, and advocating for informed end-of- life care in various community settings. Dixcy graduated from Catholic University’s Family Nurse Practitioner program in 1997. She later taught community health nursing at Iona, where she first discovered its many services. She
brings a deep respect for older adults who have stories to tell and lessons to teach.

Developing dementia or other memory loss issues can take a great toll on a person’s mood and outlook. At Iona, we see and speak with people experiencing these challenges regularly.

We understand that many family members are also unexpectedly thrown into managing a family member or loved one’s diagnosis, oftentimes with a great deal of mixed emotions and expectations. Oftentimes, these expectations can work against you.

If this is your experience, you are not alone. To help you better communicate and care for people with dementia, we’re sharing some common dos and don’ts for how to respond.

Use this list to help manage your expectations and understand the effects of this disease.

People with dementia experience:

• A range of moods and behaviors.

  The person with dementia can go from being happy and engaged, to being sad or anxious and withdrawn seemingly suddenly. They might experience restlessness, and as a result, begin to rummage, pace, or disengage from activities or receiving care. These factors can also be affected by the following: stage of condition, personality, surrounding environment, medical challenges, level of independence, and level of trauma. The number one expectation you should have is to not have any hard or engraved expectations at all. This disease brings about unpredictable behaviors and every case is different.

• Feeling agitated and anxious in the late afternoon and evening.

  Therefore, it is best to plan activities in the morning or early afternoon.

• Difficulty remembering who their friends and loved ones are.

  It’s possible that over time, they may forget your name or your relationship to them. But it’s very likely that they will remember how you treat them. For example, they will remember your kindness.

• Feeling overwhelmed.

  How you communicate with the person can make the difference. Speak in a calm and reassuring tone, and avoid shouting. To help avoid distractions, keep background noise low. Communicating through gentle touching can also be soothing and assuring for persons with dementia.

• Becoming easily startled.

  When you first interact with the person, approach them from the front to avoid startling them, smile (as much as possible), and address them by name.

• Trouble communicating clearly and being understood by others when speaking.

  Pay attention to the person’s body language and non-verbal cues, which can be their way of communicating with you. As the disease progresses, you may also have to adapt how you communicate with them. For instance, you might use short and simple statements or questions, or ask questions with “yes” or “no” responses. You can also break tasks down into multiple steps and give instructions one step at a time or make requests one at a time.

• Repeat questions and statements multiple times, or forget people, dates, and words.

  Although dealing with this regularly can be taxing and frustrating, it’s important to communicate as patiently, and as calmly as possible. Instead of saying, “You already said that,” respond as if you’re hearing it for the first time. You can also shift gears by responding with a nod to what they said and then change the subject.

• Challenges with exercising their independence.

  Most people diagnosed with dementia are used to living independently. With this in mind, frame questions and instructions in a positive way that reaffirms their agency. For example, instead of instructing a person with dementia to do something, use the “let’s do it” or “you can do it” approach. For example, avoid saying, “Get dressed.” Instead say, “Let’s get ready for the day and get dressed.” It’s also important to avoid talking down to them and using “baby talk.”

Do you have other tips or advice for communicating with someone with dementia?

Let us know in the comments what you have learned and found helpful through your caregiving journey.

Adult day health services provide older adults living with chronic conditions individualized therapeutic, social, and health services during the day.

Participants enjoy lively activities and the company of their peers, all within a safe environment. At the same time, their families are able to go to work, run errands, or simply take time for themselves–all with the knowledge that their loved one is not bored or lonely at home all day.

But knowing whether adult day health services is the right option for your family can be difficult. These questions might help. If you answer “yes” to any of the following questions, adult day health services may be the right care option for you and your loved one:

• Do you worry about your family member’s safety if they are alone at home?
• Are you concerned that your loved one is bored, unhappy, or isolated sitting at home all day? Do they have someone to talk to during the day?
• Do you worry that your family member’s physical or cognitive health is declining?
• Does your loved one need assistance to remember to take their medications, check their blood sugar, or eat healthy meals?
• Do you want to avoid senior facilities, and help ensure your loved one remains at home for as long as possible?
• Do you feel overwhelmed by your caregiving responsibilities? Would you like time away from your family member to go to work, run errands, or rest?

To learn more about how adult day health services can help you and your family, and to schedule a tour of Iona’s Wellness & Arts Center or Washington Home Center, please contact us by calling (202) 895-9448 or emailing info@iona.org.

For many of us, Valentine’s Day marks a special time dedicated to recognizing and appreciating our significant others.

However, if your spouse or partner has Alzheimer’s or other kind of dementia, the holiday might also bring about painful reminders of the aspects of your relationship that have changed.

While it can be difficult to celebrate Valentine’s Day when your partner is unable or unwilling to actively participate, for couples who regularly honored the day, it might be even more painful to pretend it doesn’t exist.

Despite  complications that come with the progression of dementia, there are still ways you can stay connected with your loved one, and appreciate your love for them, both past and present.

Show your love, past and present, with these 6 ideas to make your day special:

1. Go through photo albums or other favorite mementos
2. Bake and decorate heart shaped treats
3. Watch a romantic comedy, or other favorite film, together
4. Reminisce on the day you met or how you fell in love
5. Brighten up a space with a fresh flower arrangement
6. Enjoy a special meal together from your favorite restaurant (and, remember, you can always order it to-go if you’re concerned about eating out)

Ultimately, acknowledging your partnership is the best you can possibly do for a partner with dementia — and for yourself. Remind them that they are loved, that they love you, and that you continue to share a connection.