Putting the “Happy” back into Holidays
… Celebrating the season with loved ones who have dementia
By Susan Stewart
Just last week, I wrote an article about the importance of including our elders in our seasonal celebrations, and ways to make sure they are not forgotten in the holiday rush. I was heartened to find that many of the researchers emphasized that special care should be taken with loved ones who suffer from Alzheimer’s Disease and the other dementias. The best advice I found was the following piece from the Alzheimer’s Association (https://www.alz.org/care/alzheimers-dementia-holidays.asp) which contains excellent ideas and resources for support. Enjoy!
(article start) The holidays are a time when family and friends often come together. But for families living with Alzheimer’s and other dementias, the holidays can be challenging. Take a deep breath. With some planning and adjusted expectations, your celebrations can still be happy, memorable occasions.
Check in with the person with dementia
In the early stage, a person with Alzheimer’s may experience minor changes. Some may withdraw and be less comfortable socializing while others may relish seeing family and friends as before. The key is to check in with each other and discuss options. A simple “How are you doing” or “How are you coping with everything?” may be appreciated. Plan the holidays together, focusing on the things that bring happiness and letting go of activities that seem overwhelming or stressful.
For people in the middle or late stages, consider rethinking holiday plans. Everyone is unique and finding a plan that works can involve trial and error.
Familiarize others with the situation
The holidays are full of emotions, so it can help to let guests know what to expect before they arrive.
If the person is in the early stages of Alzheimer’s, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat him- or herself. Family can help with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts.
If the person is in the middle or late stages of Alzheimer’s, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited. These changes can be hard to accept. Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.
You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Here are some examples:
“I’m writing to let you know how things are going at our house. While we’re looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.
“You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___.
“I’ve enclosed a picture so you know how ___ looks now. Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.
“Please understand that ___ may not remember who you are and may confuse you with someone else. Please don’t feel offended by this. He/she appreciates your being with us and so do we.”
“Please treat ___ as you would any person. A warm smile and a gentle touch on ___’s shoulder or hand will be appreciated more than you know.”
“We would ask that you call when you’re nearby so we can prepare for your arrival. With your help and support, we can create a holiday memory that we’ll all treasure.”
For more ideas on how to let others know about changes in your loved one, join ALZConnected, our online support community where caregivers like you share tips on what has worked for them.
- The stress of caregiving responsibilities layered with holiday traditions can take a toll.Call a face-to-face meeting or arrange for a group discussion via telephone, video chat or email for family and friends to discuss holiday celebrations. Make sure that everyone understands your caregiving situation and has realistic expectations about what you can and cannot do. No one should expect you to maintain every holiday tradition or event.
- Be good to yourself.
Give yourself permission to do only what you can reasonably manage. If you’ve always invited 15 to 20 people to your home, consider paring it down to a few guests for a simple meal. Let others contribute. Have a potluck dinner or ask them to host at their home. You also may want to consider breaking large gatherings up into smaller visits of two or three people at a time to keep the person with Alzheimer’s and yourself from getting overtired.
- Do a variation on a theme.
If evening confusion and agitation are a problem, consider changing a holiday dinner into a holiday lunch or brunch. If you do keep the celebration at night, keep the room well-lit and try to avoid any known triggers.
Involve the person with dementia
- Build on past traditions and memories.
Focus on activities that are meaningful to the person with dementia. Your family member may find comfort in singing old holiday songs, watching favorite holiday movies, or looking through old photo albums.
- Involve the person in holiday preparation.
As the person’s abilities allow, invite him or her to help you prepare food, wrap packages, help decorate or set the table. This could be as simple as having the person measure an ingredient or hand decorations to you as you put them up. (Be careful with decoration choices. Blinking lights may confuse or scare a person with dementia, and decorations that look like food could be mistaken as edible.)
- Maintain a normal routine.
Sticking to the person’s normal routine will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest.
Adapt gift giving
Arrange for respite care so you can enjoy a movie or lunch with a friend.
- Encourage safe and useful gifts for the person with dementia.
Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet (available through MedicAlert® + Alzheimer’s Association Safe Return®), comfortable clothing, favorite foods and photo albums.
- Put respite care on your wish list.
If friends or family ask what you want for a gift, suggest a gift certificate or something that will help you take care of yourself as you care for your loved one. This could be a cleaning or household chore service, an offer to provide respite care, or something that provides you with a bit of rest and relaxation.
When the person lives in a care facility
A holiday is still a holiday whether it is celebrated at home or at a care facility. Here are some ways to celebrate together:
- Consider joining your loved one in any facility-planned holiday activities
- Bring a favorite holiday food to share
- Sing holiday songs and ask if other residents can join in
- Read a favorite holiday story or poem out loud (article end)
So deck the halls, walk in a winter wonderland, and raise of cup of kindness often. Your holidays will be happier for it. # # #
The Village at Sydney Creek is pleased to announce our new venture for 2018. We are currently in the process of opening an adult day program to complement our state of the art memory care community. We are very excited for the opportunity to further serve the San Luis Obispo community affected by Alzheimer’s disease and related dementias.
I recently came across the article below from the Lewy Body Disease Association. Lewy Body Disease (LBD) is a form of dementia that we are seeing more of these days. I believe in most part due to medical advancements made in diagnostics. I hope you enjoy the article and if you have any questions please feel free to contact me at Sydney Creek. Kellie Gallegly, Executive Director
Caring for a person with dementia can be a very stressful job
Many caregivers are not using important community resources that can make their job easier and help them maintain both their health and emotional well-being. In fact, only 21 percent of LBD caregivers report using Adult Day Services (ADS). New research into the benefits of ADS may lead more dementia caregivers to consider it.
Researchers, led by Steven H. Zarit, PhD of Pennsylvania State University, extensively interviewed 173 family caregivers of individuals with dementia for 8 consecutive days. On some of those days, the individual with dementia attended ADS and on others the caregiver provided the bulk of the care. The research analyzed the caregivers’ experiences with stress and changes in mood and health, and compared their scores on days their relative attended ADS and days they provided most or all of the care.
Researchers identified behavior and psychological symptoms in the person with dementia as care-related stressors. These are reported by caregivers as the most challenging and upsetting aspects of caregiving. Stressors not related to caregiving were also measured, such as finances, arguments with other people and work-related events.
Positive experiences included sharing a good laugh with someone, a positive experience at work, with a friend or relative or at home. Caregiver mood was also measured during the same time, such as anger, anxiety, depression and positive emotions. Daily health symptoms such as pain, fatigue, gastrointestinal symptoms were also assessed.
On the days using adult day services caregivers had fewer care-related stressors and reported more positive experiences. As caregivers engage in more non-care activities during those days, non-care stressors were higher when the individual with dementia was in ADS. Interestingly, non-care stressors were largely work-related but were also accompanied by more positive experiences as well. This suggests that work may provide an enjoyable outlet for some caregivers.
Caregivers experienced a reduction in their own anger on ADS days. ADS use also had a protective effect on caregivers’ depression. On days when stressors were higher than normal, caregivers’ depression scores were elevated if they were home with their relative, but did not increase if their relative was attended ADS. While anger was lower on ADS days, health symptoms were more frequent.
This may be a result of caregivers having more time to focus on themselves and be more in tune with minor health symptoms they might otherwise ignore.
Long term exposure to stress has negative effects on caregivers’ emotional and physical well-being
Providing caregivers with frequent relief from daily stressors may enable them to more effectively manage stressors when they do arise. This may provide some protection against the effects of chronic stress associated with caregiving. Prior studies have also found that emotional reactivity to stressors is associated with increased risk of illness. The findings of decreased anger and depression suggest that ADS use may lower caregivers’ risk of illness.
The use of ADS benefits both the caregiver and person with dementia. Research indicates people with dementia who use ADS programs show improvements in behavior, mood and sleep. For some ADS may be a helpful non-pharmacological treatment for behavior and mood in dementia.
This study was funded by the National Institute on Aging and was published in The Gerontologist in June, 2013.
Steven H. Zarit. The Effects of Adult Day Services on Family Caregivers’ Daily Stress, Affect, and Health: Outcomes From the Daily Stress and Health (DaSH) Study. The Gerontologist. June, 2013. Available at: http://www.ncbi.nlm.nih.gov/pubmed/23690056. Accessed August 5, 2013.