New Later Stage Support Groups Available
While navigating the ever challenging and ever changing journey of dementia, many caregivers have turned to support groups for guidance and support. The Cleveland Area Chapter has over forty support groups that are designed to help caregivers dealing with all different stages of the disease.
This year, we have added four new specialty groups focusing on the later stages of the disease. Over time, caregivers and support group facilitators have provided us with feedback that the needs of later stage caregivers were not being met in our general caregiver support groups. We also heard from those who recently lost a loved one to the disease that there wasn’t always a place to go where their grief could be understood. One caregiver said that he didn’t know where he belonged anymore. He tried returning to the caregiver support group where he had bonded with other caregivers over the years but no longer felt like he fit with people who were actively caring for a loved one. He then tried a bereavement support group but again didn’t feel he fit because his grieving process didn’t matched those in the group who lost loved ones to other diseases. It was experiences like these that prompted the need for piloting the support groups for later stage issues and early grief.
The creation of these specialty group also addressed another support group concern brought to our attention by new participants. They expressed that they were often uncomfortable attending a group for the first time and hearing about the end-of-life issues that later stage caregivers were experiencing.
Later stage caregivers similarly shared frustration about being in a group with early-stage caregivers at the beginning of their journey when they themselves were nearing the end.
The Alzheimer’s Association’s Later Stage Transitions Caregiver Support Groups are specially-designed for individuals nearing the end of their caregiving journey or grieving a recent dementia-related loss due to death. The focus of these groups is to provide an opportunity to express feelings and grief, to share stage-specific insights, and to engage in problem-solving for late-stage decision making. The groups meet monthly at regularly-scheduled times and are led by trained facilitators.
Although the four Later Stage Transitions Caregiver Support Groups are at their infancy, we have already seen great value to their addition to our programming. Participants have reported back that these groups are meeting needs that our other groups and programs have not been able to support.
The Later Stage Transitions Caregiver Support Groups have allowed deeper sharing of experiences like, changing roles, re-establishing neglected friendships, loneliness, feelings of guilt, new decision-making, and self-care. The opportunity to discuss these topics with others having similar experiences greatly supports participants in coping with the final stage of dementia.
Daylight Savings Ends November 1st - How to Prepare for the Change
A person with Alzheimer’s may experience increased confusion, anxiety, agitation, pacing, and disorientation beginning at dusk and continuing throughout the night. These late-day increases in behavioral problems are often called sundowning. Sundowning can disrupt the body's sleep-wake cycle, causing more behavioral problems.
Factors that may cause sundowning:
- Mental and physical exhaustion from a full day trying to keep up with an unfamiliar or confusing environment.
- Caregivers, who are exhausted by the events of the day, may give off nonverbal cues of frustration, which could lead to negative reactions in the person with Alzheimer’s.
- Reduced lighting and increased shadows may cause persons with Alzheimer's to misinterpret what they see, leading to increased agitation.
Tips to manage sundowning:
- Be mindful of your own mental and physical exhaustion. If you are feeling stressed by the late afternoon, the person may pick up on it and become agitated or confused. Try to get plenty of rest at night so you have more energy during the day.
- Plan more challenging activities for the person (like doctor appointments, trips and bathing) in the morning or early afternoon hours when the person is more alert.
- Make notes about what happens before sundowning events and try to identify triggers.
- Limit the amount of environmental distractions during the evening hours (TV playing, children arriving, doing chores, loud music playing, etc). These distractions may add to the person’s confusion.
- Have a larger meal at lunch and keep the evening meal smaller and simpler.
- Keep the home well lit in the evening. Adequate lighting may reduce the person’s confusion.
Don’t physically restrain the person if he or she begins to get agitated, as restraint typically further increases agitation levels. If the person needs to pace back and forth, allow this to continue under your supervision. Take a walk outdoors if the weather permits - this may reduce restlessness.
Talk to the physician about best times of day for taking medication.
When behavioral interventions and environmental changes do not work, some people with Alzheimer’s may need medication for their agitation during the late afternoon and evening hours. This should be discussed with the doctor.
Caregiver Tips for the Upcoming Holiday Season
Holidays are a time for family togetherness and memories, but can also be a time filled with stress and sadness for the person with dementia and the caregiver. Here are a few tips to help with the season.
Tips for Making the Holidays Easier
Hosting holiday events
- Adjust expectations by doing only what you can reasonably manage. No one can expect you to maintain every holiday tradition or event -- do not pressure yourself.
- Consider a holiday celebration over a lunch or brunch.
- Ask family and friends to bring dishes for a potluck meal.
- Have food delivered by a local restaurant, grocery store, or hire a caterer if feasible.
- Avoid taking on too many tasks at one time to avoid additional stress for you and the person with dementia.
- Ask family or friends to host the meal at their home -- you can leave if it becomes too loud or confusing for the person.
How the person can participate
- Involve the person in safe, manageable activities, such as helping prepare food, wrap packages, hang decorations or set the table.
- Focus on holiday activities that are meaningful to the person, such as singing favorite holiday songs or eating traditional holiday foods; this may be more meaningful than attending a social event that can overwhelm the person.
- Ask a clergy member if they would hold a brief service at a quiet time at your place of worship or at your home.
- Maintain the person’s normal routine so holiday preparations don’t become disruptive or confusing to him/her.
- Plan time for breaks so the person can rest in a quiet area away from noise and crowds.
Attending holiday events with the person
- Prepare the host for special needs such as a quiet room for the person to rest in, easy-to-eat finger foods, and lower music levels; discuss potential behaviors the person may exhibit and how to address them.
- Plan time for breaks so the person can rest in a quiet area away from noise and crowds.
- Consider assigning someone to be with the person; this individual can cue the person as to who people are, provide assistance with eating and other activities, and support the person so he or she feels engaged during the event.
- Arrange for respite services if the person is not able to participate in the holiday events.
Gift Buying Guide
- This can be a great gift for those experiencing anxiety or agitation. Hymns can be especially comforting if the person is religious.
- If a person is interested, try also buying them a soft pair of headphones. They can listen to the music and drown out any loud noises that may startle them.
- Pictures of family members or memories can be a great gift and conversation starter.
Comfortable, loose clothing
- Clothing can be a great option, especially if a person has experienced weight change or becomes anxious when trying to get dressed. Uncomplicated clothing, such as pants with elastic waistbands, can be a great gift giving option and simplify daily routines for caregivers.
Soft blanket, sweater or shawl
- This can feel nice on a person’s skin, provide warmth and potentially provide comfort. Blankets, sweaters or shawls also make nice gifts.
Adapt Gift Giving
- Be flexible and don’t take disinterest personally. A gift that someone may have enjoyed in the past, may not interest them now. As a person’s brain changes due to the disease, so may their likes and dislikes.
- Make wrapping easy. Instead of wrapping a gift in paper and ribbon, try putting the gift in a bag with tissue paper. This is especially helpful for individuals with fine motor difficulties.
In The Know: Alzheimer’s Research in Cleveland – Hear from Local Researchers
Research plays a crucial role in understanding more about Alzheimer’s disease. In a collaborative effort with Arden Courts, we invite you to a series of evening programs with local scientists and researchers in the field. Each presenter will focus on their area of expertise, and answer questions presented by the community. RSVP required. Click here for complete details. (Link: http://external.alzclv.org/PDF/ArdenCourtFlier2015.pdf)
Arden Courts 7:00-8:30 pm
October 7, Chagrin Falls
October 8, Westlake
October 14, Parma
Don’t miss These Upcoming Free Webinars!
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Enjoy the convenience of learning from the comfort of your home. Click here for details on our upcoming free webinars.