It was 2011 when our family discontinued the tradition of opening our own Christmas presents; “own” being the operative word. We still opened presents; we just did it in a communal way where someone would pull a gift from under the tree and announce the recipient. We would then all open it together and discuss the contents. It was a way to accommodate my husband, Dave, who could no longer physically participate in the unwrapping of a gift or quite grasp the concept of gift-giving. He was living with Alzheimer’s and no longer had the ability to fully take part in many of our holiday traditions.
As the holidays approach, I am mindful of the many individuals who are living with Alzheimer’s or other forms of dementia, as well as their caregivers and loved ones. Currently, 65,000 Iowans older than 65 live with Alzheimer’s — the most common form of dementia.
For those individuals and their families, it can be difficult to “be merry” or feel joyful when so much of their focus is on safety, medication, finances and an uncertain future. But, with some creativity — and a whole lot of flexibility — the holiday season can be a time of connection and memorable moments.
In particular, planning ahead can make holiday activities more meaningful and less stressful for all involved. First, consider your loved one. If it’s possible to discuss plans together, ask what they enjoy most about the holidays and plan around those. But, if all of the extra stimulation, additional people and changes in routine are too difficult for the person living with dementia, consider remaining at home and having just one or two people visit at a time. Holiday meals — while great fun for many — can make someone with dementia want to flee and find a quiet, familiar place. Be respectful of their choice to disengage.
This type of approach — where the individual living with dementia is able to participate in decision-making and feel a sense of control — is appropriate far beyond the holidays.
At the Family Caregivers Center of Mercy and Mercy Medical Center, we’re increasingly looking at dementia from a more contemporary perspective and finding ways to foster a dementia-inclusive environment.
In 2017, two years after my husband passed away, I read a book called “Dementia Beyond Disease” that really resonated with me. The author, Dr. Allen Power, described the seven domains, or aspects, of well-being and applied them to dementia. This book — and, more important, Dr. Power — have become pivotal as Mercy works to determine what more it can do to better meet the needs of people living with dementia, as well as their care partners and families.
Some aspects of Dr. Power’s model of well-being have been recently adopted as part of our care philosophy at Mercy. They include:
• All people, whether aging or living with dementia or another chronic condition, are considered “present” and not “already gone.”
• Dementia is seen as a shift in the way a person living with dementia experiences the world.
• All people living with dementia direct their own life.
• People not living with dementia form relationships with people living with dementia; all interaction is based on the relationship first.
• The emphasis is on living, with living replacing the word “care.”
• It is crucial that meeting each person’s needs for well-being be individualized to their unique history and current preferences.
As you approach this holiday season, it may be helpful to ask, “How do we change our plans and traditions to make it best for our family member living with dementia, and what works best for everyone?” You may find that long-standing traditions need to be re-examined and simplified, and that small moments of joy — such as a sip of cocoa, the taste of a Christmas cookie, the sounds of a favorite holiday song or reminiscing about a favorite ornament — can spark special memories and create joyful moments for everyone.
This kind of intentional and thoughtful approach could go far beyond the holiday season in giving life new purpose for you and your loved ones. It could be a gift that everyone unwraps.
Kathy Good volunteers as executive director at the Family Caregivers Center of Mercy in Cedar Rapids. Good was a caregiver for her husband, Dave Good, who passed away in 2015 after living with dementia for 12 years.