January 2012

Welcome to In This Together, our new resource for caregivers!
This e-publication from the Cleveland Area Chapter of the Alzheimer's Association will feature helpful articles, healthy tips and educational resources for those who care for individuals at all stages of memory loss.

Alzheimer's is a challenging disease. We understand what you're going through, because we've been there. Please let us know what questions you have about memory loss, dementia and Alzheimer's and what resources you'd like to see in this new publication. We welcome your comments! Please submit comments to info@alzclv.org.

Enjoy!

Nancy Udelson
Executive Director
Alzheimer's Association
Cleveland Area Chapter

As the primary caregiver to someone with Alzheimer’ s disease or dementia, do you ever wonder what you would do if you needed to take a “time-out” from caregiving to take care of yourself? Caregivers often overlook their own needs for medical wellness or treatment until a crisis arises–usually because they can’t imagine how they would find a replacement caregiver or pay for the help.

That’s how the Caregiver in Need Fund can help. This program is designed for caregivers interested in making alternative care arrangements for an individual with memory loss in situations where there is a short-term need. Some examples of possible situations include but may not be limited to:

• The primary caregiver needs to attend to their own health care through surgery or treatment.
• The primary caregiver becomes unexpectedly incapacitated.
• The primary caregiver requires time to plan for transition into an alternate living situation.
• Hospitalization of the person with memory loss necessitates intense support from the family.
• An intense care-giving situation warrants a break for the primary caregiver.

The Alzheimer’s Association Cleveland Area Chapter will reimburse caregivers up to $500 for respite services used to provide alternative care arrangements during the short term need. The Primary caregiver must currently reside with the person with dementia and provide all funding-required demographic information. A Care Consultant will work with the caregiver or other family member to identify agencies that can provide the temporary help that is needed and support the family every step of the way.

If you would like more information about the program or to enroll please call the Helpline at 1-800-272-3900. Funding for this program was made possible through generous contributions to the Alzheimer’s Association Cleveland Area Chapter Fund-A-Need Auction that was held at the 2011 Annual Dinner.

Here is what just a few caregivers shared with us after they used the program…

"Just want to say thank you! It helped when I thought I had not a day out. It is hard to be in recovery and take care of a loved one at the same time. Thank you – you were my escape."

"Thank you for some quiet time and needed rest and sleep. It was a blessing to me and my family. Thank you!"

"I appreciate all the financial help I received. I was hospitalized for cancer treatment and had to put my husband in Assisted Living. Thank you."

"I credit this program with saving my mother’s life. As the primary caregiver for my father, the stress of care taking without respite support was sapping her energy, strength, and will."

"Thank you from the bottom of our hearts! This money from your organization was so much helpful for our mom. We appreciate everything you do, it was such a blessing."

"The Caregiver in Need program helped us greatly defray the cost of 24 hour home helpers."

THE “SHARE” PROJECT OFFERS A SHARED EXPERIENCE

Research shows that staying active and planning for the future helps families who are dealing with memory loss. SHARE, which stands for Support Health, Activities, Resources & Education, is designed to support individuals with memory loss and their families in preparing for the challenges that lie ahead and the Alzheimer’s Association and Benjamin Rose Institute are working together to provide this no-cost project.

If you or someone you care about is experiencing memory loss, you may qualify for enrollment in the SHARE project. All SHARE activities will take place in your home or another place of your choice over a 6-month period and you will be compensated for your time. This will be an opportunity for you to learn more about memory loss and symptoms that accompany it, explore and communicate care values and plan together for the future through joint decision making.

If you would like more information about the SHARE project, please contact our Helpline at 1-800-272-3900.

LORAIN FAMILY FINDS HOPE WITH ALZHEIMER’S PROGRAM RDAD strengthens individuals with Alzheimer’s physically & mentally

As dementia progresses, individuals can drift into isolation and sadly, end up spending too much time staring endlessly at a television screen. However, physical activity has numerous benefits for those diagnosed with dementia, Alzheimer’s and memory problems in general. The Alzheimer’s Association Cleveland Area Chapter is bringing a specialized exercise program directly to the homes of those who need it most – for free – with a new program called RDAD (Reducing Disability in Alzheimer’s Disease). The program has been funded to serve as many as 150 people and the chapter is on the look-out for more people to sign up.

This free program provides families with more than a dozen personal visits from a trained professional who teaches individuals with memory problems and their caregivers how to do simple exercises to improve their health. The program also teaches family members about symptoms and how to care for individuals with memory loss.

For Steve Cain, of Lorain, the RDAD program has been instrumental in keeping his wife engaged in stimulating activities rather than just watching TV. “I’m always trying to get her involved in things to keep her active,” Cain said “She doesn’t mind participating in this program and it’s a nice change from her regular activities.”

Cain’s wife Mary was diagnosed with dementia six years ago. “Participating in the program makes her concentrate and use her thinking powers. I believe the physical exercises actually stimulate her brain,” Cain said. “It carries on into her functioning in her everyday life. I have also noticed an improvement in her physical strength and balance.” Cain believes his wife is more stable walking and getting in and out of the house.

Benefits of Exercise and Alzheimer’s
When Alzheimer’s individuals and others with memory problems engage in physical activity, there are both mental and physical health benefits. Even simple exercise has shown to prevent muscle weakness, reduce falls and improve balance and flexibility. Those who exercise show a decrease in mental decline, improved behavior and better communications skills.

“Physical activity can also play a part in reducing the symptoms of anxiety and depression, sometimes experienced by people with dementia,” said Lauren Tortorici, Clinical Care Coordinator, Alzheimer’s Association. “Caregivers participating in the RDAD program have also shared that their loved ones are more alert and higher functioning after doing the exercises,” she said.

The RDAD program provides 14 home visits and two follow up calls with a specially trained professional. Involvement requires participation by both the individual with memory loss and their caregiver. The Cains just started the program in September.

“Mary’s doctors were excited about her participating in the program; especially her neurologist,” Cain said.

A Joint Effort
The Alzheimer’s Association Cleveland Area Chapter joined with the Ohio Department of Aging, The Benjamin Rose Institute, and the other Association Chapters in Ohio to implement RDAD with support through a grant from the Administration on Aging.

The program hopes to improve the ability of the person with memory problems to carry out activities of daily living while also helping family caregivers provide assistance. The program has funding to serve 150 individuals with memory loss during the two years that the program is being implemented. Individuals with memory loss engage in simple strengthening, balance, flexibility and endurance exercises. Participants must have some ability to stand and walk. The initial exercise and education program was developed by Dr. Linda Teri from the University of Washington, Seattle.

Anyone interested in learning more about the RDAD program can call the Alzheimer’s Association Cleveland Area Chapter at 216-721-8457 or 1-800-272-3900 for more information.

BEATING THE WINTER BLAH’S
Structuring Activities to Make the Day Meaningful

Activities are an integral part of life. They fill our days, provide us with a sense of purpose and bolster our self-esteem. This is as true for persons with memory loss as it is for you and I. However, with memory loss individuals often experience a lack of concentration and confusion. This makes it difficult to initiate and carry out activities. Often a person experiencing memory loss will be unable to think of an activity or realize that they are bored. In order to incorporate and insure that activities are successful it is important to know the basics of what an activity is, where and when an activity can take place, and how to go about planning an activity.

Activities can be defined as those tasks that make up our day. Activities needn’t always be thought of as only leisure based, like music and exercise, but should also include more mundane and necessary tasks, like bathing and cleaning. Activities are those elements of our days that have purpose. Activities can take place at a variety of times throughout the day. Activities can be incorporated into part of a daily routine or added into those instances where not much is going on. Flexibility in timing of activities can be helpful.

In order to maintain or introduce activities within the life of the person with memory loss, planning is important. The individual will need more support to complete or continue an activity. It is important to choose activities that are enjoyable for an individual, ones that they can participate in without frustration. Breaking down the activity into small manageable steps is always helpful. Monitoring progress and intervening as needed, can also help to ensure success.

Especially in the early stages, of the disease, intervention should be the least intrusive as possible, helping with only the portion of the activity that the individual is having trouble with as opposed to taking over and completing the activity for them. Individuals experiencing memory loss often lose initiative, the ability to start and continue activities. Often with memory loss, persons will need not only to be set up with an activity but will need prompts to continue to stay on task. If prompting is no longer effective, it might be helpful to have optional activities that compliment the individual’s rhythm, changing topics or activities as they do. In addition, familiar activities that allowed the individual to feel successful will become more difficult to continue independently. Persons will need more support to participate in these and would benefit from finding other activities to replace those that are no longer beneficial.

Begin by thinking of the activities that your family member enjoyed. Keep in mind your loved ones interests. Was your family member a homemaker or cook; construction worker or Mr. Fix-it; a teacher or bookworm, etc? Next, think about the activities that are similar to those that your loved one previously found enjoyable. Listening to books on tape is “similar to” reading. Planning a meal by looking through cookbooks or cooking magazines is “similar to” cooking, etc.

Then consider what roles your family member is most comfortable with: Parent, teacher, an assistant, trouble shooter, etc. Use this information to design the activities in the best context. If your loved one is a “trouble shooter” and the activity is cooking, then adding each ingredient while you stir may be more appropriate roles for both of you than the opposite. Please read over this comprehensive list of activities to try. Not all activities will work for everyone. Some activities once started can be continued independently. Often, however, activities are most successful when done together or when done side by side. Here are some suggestions: