People with Down syndrome seen as candidates for Alzheimer’s research

People with Down syndrome represent the world’s largest population of individuals predisposed to getting Alzheimer’s disease. Experts say that by age 40, 100 percent of individuals with Down syndrome have Alzheimer’s pathology in their brain, creating an opportunity for amlyoid research that could benefit knowledge of both diseases.

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Accessing relief programs and services is critical for caregivers

Caregiving for a person with Alzheimer’s disease brings physical, mental and emotional challenges. Caregiver relief programs, sometimes called respite, provide a temporary break from your daily caregiving responsibilities. Using these services can also support and strengthen your ability to continue taking care of the individual with Alzheimer’s.

Respite Care

Everyone needs a break. Respite care provides caregivers a temporary rest from caregiving, while the person with Alzheimer’s continues to receive care in a safe environment. Using respite services can support and strengthen your ability to be a caregiver.

• Using respite care
• Types of respite care
• Overcoming concerns

Using respite care

Respite care can help you as a caregiver by providing a new environment or time to relax. It’s a good way for you to take time for yourself.

Respite care can provide:

• A chance to spend time with other friends and family, or to just relax

• Time to take care of errands such as shopping, exercising, getting a haircut or going to the doctor

• Comfort and peace of mind knowing that the person with dementia is spending time with another caring individual

Respite care services can give the person with dementia an opportunity to:

• Interact with others having similar experiences
• Spend time in a safe, supportive environment
• Participate in activities designed to match personal abilities and needs

Plan Ahead: Respite Care for Unexpected Situations

Emergencies, unplanned situations or unexpected trips can create a need for immediate care by an alternative caregiver. Try providers out in a non-emergency situation, so you’re ready if the need arises. Also, talk with people you trust — including family, friends and neighbors — about helping out in an emergency. It’s a good idea to have contact information for the person with dementia’s medical team as well as a list of all current medications (with dosage and frequency taken) easily accessible at all times.

Types of respite care

Respite care can be provided at home — by a friend, other family member, volunteer or paid service — or in a care setting, such as adult day care or residential facility.

In-home care services offer a range of options including:

• Companion services to the individual with companionship and supervised activities
• Personal care or home health aide services to provide assistance with bathing, dressing, toileting and exercising
• Homemaker or maid services to help with laundry, shopping and preparing meals
• Skilled care services to help with medication and other medical services

Adult day centers offer a place where the person with Alzheimer’s can be with others in a safe environment. Staff leads planned activities, such as music and art programs. Transportation and meals are often provided.

Residential facilities may offer the option for a stay overnight, for a few days or a few weeks. Overnight care allows caregivers to take an extended break or vacation while the person with dementia stays in a supervised, safe environment. The cost for these services varies and is usually not covered by insurance or Medicare.

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TIP: Sometimes, a person with dementia may have difficulty adjusting to a new environment. Regular stays can allow the overall adjustment to become easier.

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In-Home CareAdult Day CentersResidential Care Facilities

Overcoming concerns

It’s normal to be apprehensive about trying something new. Common concerns caregivers have about using respite care include:

• Cost: You may be concerned about how to pay for services. Look into financial assistance such as scholarships, sliding scale fees or government programs. Contact your local Alzheimer’s Association to learn what kind of financial assistance may be available.
• Reliability: You may be concerned about the dependability of the aide or service. Those who work for an agency or facility should be reliable and well trained, and are often certified. Ask each individual and facility about training and qualifications. If hiring someone independently, interview the person thoroughly and check references.
• Guilt: You may believe that you should be able to “do it all. “Seeking help does not make you a failure. It’s important to remember that respite services benefit the person with dementia as well as the caregiver.

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Sign up for August’s audio conference on middle stage Alzheimer’s

Join the Alzheimer’s Association, Greater Illinois Chapter’s audio conference, Middle Stage Alzheimer’s: Challenges and Strategies, from noon to 1 p.m. Tuesday, August 12.
Caregivers and family members experience increasingly greater challenges in the middle stage of Alzheimer’s. Though the disease impacts everyone in a unique way, there are many common challenges. This program will introduce you to strategies and techniques to help you adapt to your changing world.

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Activities can provide meaningful benefits and reduce stress

People with Alzheimer’s or other dementias don’t have to give up the activities that they love. In addition to enhancing quality of life, activities can reduce behaviors like wandering or agitation and can help reduce caregiver stress.

A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves. Many activities can be modified to the person’s ability. In addition to enhancing quality of life, activities can reduce behaviors like wandering or agitation.

• Choosing activities
• Your approach

Choosing activities

In the early stages of dementia, the person may withdraw from activities he or she previously enjoyed. It is important to help the person remain engaged. Having an open discussion around any concerns and making slight adjustments can make a difference. For example, a large social gathering may be overwhelming, but the person may be able to interact more successfully in smaller groups.

As Alzheimer’s progresses, you may need to make other adjustments to the activity. Use the following tips:

• Keep the person’s skills and abilities in mind.
  A person with dementia may be able to play simple songs learned on the piano years ago. Bring these types of skills into daily activities.
• Pay special attention to what the person enjoys.
  Take note when the person seems happy, anxious, distracted or irritable. Some people enjoy watching sports, while others may be frightened by the pace or noise.
• Consider if the person begins activities without direction.
  Does he or she set the table before dinner or sweep the kitchen floor mid-morning? If so, you may wish to plan these activities as part of the daily routine.
• Be aware of physical problems.
  Does he or she get tired quickly or have difficulty seeing, hearing or performing simple movements?
• Focus on enjoyment, not achievement.
  Find activities that build on remaining skills and talents. A professional artist might become frustrated over the declining quality of work, but an amateur might enjoy a new opportunity for self expression. For activity ideas join ALZConnected, our message boards and online support community. Every day, caregivers like you share new ideas and encourage one another.
• Encourage involvement in daily life.
  Activities that help the individual feel like a valued part of the household — like setting the table — can provide a sense of success and accomplishment.
• Relate to past work life.
  A former office worker might enjoy activities that involve organizing, like putting coins in a holder or making a to-do list. A farmer or gardener may take pleasure in working in the yard.
• Look for favorites.
  The person who always enjoyed drinking coffee and reading the newspaper may still find these activities enjoyable, even if he or she is not able to completely understand what the newspaper says.
• Consider time of day.
  Caregivers may find they have more success with certain activities at specific times of day, such as bathing and dressing in the morning.
• Adjust activities to disease stages.
  As the disease progresses, you may want to introduce more repetitive tasks. Be prepared for the person to eventually take a less active role in activities.

We Can Help

It helps to know you aren’t alone. Talking to others who are going through the same experiences as caregivers can provide you with ideas, support and resources.

• Call our 24/7 Helpline: 800.272.3900
• Locate a support group in your community
• Visit our message boards

Your approach

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Riding, remembering and celebrating love

Donna Fowler loved riding with her husband Mike on their Harley. Each August, they would lead off the annual “Remember When” Ride in Bloomington, Illinois together.
This year, Mike will be riding alone.
The 7th annual “Remember When” Ride, becomes the Donna J. Fowler Memorial Motorcycle Ride this year in her honor. Donna passed away in January leaving Mike to organize the event with his wife in mind.

Join us for the 7th annual “Remember When” Ride
When: Saturday, August 16
Time:
Sign Up: 9:00 am
Ride Starts:10:00 am
Location:
Start: Chuck’s Harley-Davidson in Bloomington, Illinois
End: VFW Bloomington, Illinois
Live Auction Fundraiser:
VFW Bloomington, Illinois
More information: 309.662.8392
Donna Fowler loved riding with her husband Mike on their Harley. Each August, they would lead off the annual “Remember When” Ride in Bloomington, Illinois together.
This year, Mike will be riding alone.
The 7th annual “Remember When” Ride, becomes the Donna J. Fowler Memorial Motorcycle Ride this year in her honor. Donna passed away in January leaving Mike to organize the event with his wife in mind.
I miss the hell out of her,” says an emotional Mike, as he remembers his bride of 38 years. “It’s going to be harder because I don’t have Donna.”
He started this ride back in 2006 with a friend, the same year Donna was diagnosed with Alzheimer’s, and took over the ride himself the following year. He says the purpose of the event is to raise awareness about Alzheimer ’s disease.
My wife ended up with Alzheimer’s and there wasn’t enough research money to take care of this. I don’t think anybody realized anything about Alzheimer’s,” says Mike. “Alzheimer’s is such a terrible disease, I can’t believe how bad it is, and what it does to those left behind.”
Hundreds of people will participate in the annual “Remember When” Ride. Last year alone the group raised more than $22,000.
It doesn’t matter what you ride,” says Mike. “It can be a car, it doesn’t have to be a Harley. All bikes and cars are welcome.”
Registration for the event kicks off at 9:00am, with the Ride starting at 10:00am. Following the ride there will be a live auction at the VFW, with all proceeds going to the Alzheimer’s Association Greater Illinois Chapter.
I wanted to raise money and leave it in McLean County so it can help and educate people to make it easier on them,” Mike explained.
My mom really watched over Donna,” said Mike. His mother, Patricia Fowler, actually shared a room with Donna at the LeRoy Manor, even though she herself was not diagnosed with Alzheimer’s. Pat passed away in May of this year, just a few months after Donna.
I think that losing Donna then losing my mother … has made my life a little bit more challenging.”
A challenge that Mike is accepting.
He is going forward with his plans for the Remember When Ride, hoping to have more people than ever come out to support his family and all those affected by this disease.
Most people aren’t prepared- and I was not…I know how hard it was on me.” He watched as the disease slowly took everything from the women he loved for more than 44 years. “My wife was beautiful and I took care of her like she wasn’t sick.”
Mike took care of Donna for as long as he could at home before she went to LeRoy Manor. He spent years brushing her teeth, feeding her and cleaning up after her. “It’s truly sad for anybody you love, it’s sad for anybody who gets the disease.” He hoped this ride will help educate the community on this deadly disease, and continue to support those suffering.
Mike wants this ride to be something the community can look forward to and celebrate. “That’s what this really is, a celebration of Donna’s life.

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