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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How slowly an aging person walks may indicate Alzheimer’s risk

The way older people walk may provide a clue about how well their brain is aging and could allow doctors to determine whether they are at risk of Alzheimer’s disease, a new study shows. The results suggest that those whose walking pace begins to slow and who also have cognitive complaints are more than twice as likely to develop dementia within 12 years.

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Senior Spotlight
94-year-old Finds Success With Second Career as Painter
Thelma Frame is an inspiration to those who feel it is too late to learn creative arts in their advanced years. The 94-year-old took up painting after 40 years of teaching grade school. Last winter, her paintings were the subject of a retrospective at the Richmond Art Museum in Richmond, Ind. Click here to view article.

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Write Your Living Will Now to Ease Burdens Later
A living will is a legal document that indicates what medical treatments and life-sustaining measures you want or don’t want. If the time comes when you can’t make your own decisions, a living will can be valuable for your family and doctor and help ensure your preferences are honored. Click here to view article.

MEDICAL NEWS

Write Your Living Will Now to Ease Burdens Later

Share : Approximately 80 percent of Americans fail to share their wishes for their end-of-life care, leaving family members and doctors to decide what life-saving measures to perform. Not only can this result in family quarrels, but you may receive care that is more aggressive than you desire. For example, CPR (cardiopulmonary resuscitation), which has a low success rate, can be violent and leave patients in worse condition. Not only does it make sense to write a living will as you get older and become increasingly prone to chronic illness, but it is also wise to understand the treatment options and their risks. A living will is a legal document that indicates the types of medical treatments and life-sustaining measures you want or don’t want, such as cardiopulmonary resuscitation (CPR), feeding tube, and mechanical breathing (respiration and ventilation). In addition to a living will, people are also encouraged to have an advance directive known as a medical power of attorney (POA). (See “Assigning Medical Power of Attorney is Both Difficult and Easy,” October 2012, Senior Spirit).

A medical POA is a legal document that designates an individual—referred to as your health care agent or proxy—to make medical decisions on your behalf if you’re unable to do so. Like the POA, the living will becomes a tool to help your family and medical staff determine the life sustaining measures and medical treatments to pursue at the end of your life if you are unconscious or not capable of deciding on your own.

In addition to executing a living will and medical POA, it’s important to discuss your beliefs and wishes with family members and your doctor. If they know beforehand what measures you want taken—and, just as important, why—when the time comes, the process can be easier and less stressful for everyone. (For where to find forms, see sidebar.)

Important Questions to Ask

When writing your living will, give serious consideration to the kind of treatments you want. Questions to ask yourself include:

• How important is it to be independent and self-sufficient?
• What would make me feel that my life was not worth living?
• Do I want treatment to extend life in any situation? Or only if a cure is possible?
• How might my decision about life-sustaining treatment be different if I was 50, 70 or 90 years old?
• Would the treatment lessen my suffering?
• What kind of burdens and side effects will the proposed treatment impose?
• What are the potential benefits and risks associated with CPR, a feeding tube, ventilation, etc.?

(Adapted from Mayo Clinic and American Hospice.)

Weighing CPR

When a person stops breathing or the heart stops beating, medical personnel administer CPR, which can consist of two stages: chest compressions (forceful pressing on the chest to stimulate the heart) and artificial respiration (mouth-to-mouth rescue breathing). In addition, personnel may use electric stimulation and special medicines to resuscitate a stopped heart. CPR can help keep oxygenated blood circulating through the body, which can help prevent brain and organ damage. Without CPR, a person is likely to become unconscious almost immediately and will die in 5-10 minutes.

However, when a patient has an advanced life-threatening illness (such as late stages of cancer) and is dying, CPR may not provide any benefits (Family Doctor). Additionally, the survival rate after CPR is only 15 percent, but it decreases to 2 percent for the frail and elderly (Allina Health). If successfully, CPR may result in a sore chest, broken ribs or a collapsed lung, especially in elderly patients with fragile bones. Though they may survive, those especially who are older and/or frail may have a drastically reduced quality of life, suffer from brain damage or other health complications, and may require ongoing medical support (e.g., ventilator).

Other Treatment Considerations

Other treatment considerations to consider when executing a living will include (adapted from the Mayo Clinic and American Hospice):

Mechanical ventilation. A person who is unable to breathe sufficiently may need to have a tube inserted down the nose or throat (referred to as intubated), or surgically through the neck, into the trachea. This connects to a ventilator (breathing machine), which breathes for the patient. However, for those with certain lung and heart diseases, the likelihood of resuming normal functioning after removal from the ventilator is low. Intubated patients can’t talk and may need medicine to keep them comfortable. Some patients who survive may need to be on a breathing machine in the intensive care unit (ICU) for a while. Bacteria in the tubing can result in pneumonia, and patient immobility can lead to psychosis, skin breakdown and progressive weakness.

Nutrition and hydration assistance. To keep a patient alive, medical professionals will automatically supply the body with nutrients and fluids intravenously or via a feeding tube. If you are seriously ill or close to death, life-sustaining treatment will not be stopped unless spelled out in your advance directives. Permanently unconscious patients can sometimes live for years with artificial feeding and hydration. If food and water are removed, death will occur in a relatively short time due to dehydration, rather than starvation. Such a course of action generally includes a plan of medication to keep the patient comfortable.

Admission to the ICU. The ICU is generally meant for a person who is reversibly critically ill and who desires full resuscitation should cardiorespiratory arrest occur. But patients can suffer from isolation, as visitors are restricted, and immobilization, as well as disruption by light, noise, diagnostic tests and therapeutic interventions, which are uncomfortable and potentially painful. A frail patient is prone to develop ICU psychosis.

Additional Considerations

Including a do-not-resuscitate (DNR) order in your living will may only prevent CPR, not other life-saving measures. Some people add a DNI—do not intubate. An alternative that is gaining popularity is AND—allow natural death. An AND advises doctors to offer only comfort measures, because any other aggressive treatment, such as intubation, may only prolong suffering. AND also conveys a positive, and perhaps gentler, message to those who must decide whether to continue life-saving measures for their loved one.

If your illness is terminal, you can also request in your living will that you want palliative care, which focuses on quality of life and dignity by helping a patient remain comfortable and free from pain until life ends naturally.

Some living wills encompass more than just DNR or DNI requests by spelling out your thoughts about dying, which can be more helpful to your doctors, friends and family when deciding what kind of end-of-life care you want. One of the more well known is Five Wishes, which goes beyond medical issues to deal with personal, emotional and spiritual concerns. The downloadable form includes questions about how comfortable you want to be, how you want people around you to treat you and what you want your loved ones to know when you’re facing the end of your life.

Five Wishes was written by Jim Towey, who worked with Mother Teresa and was inspired by her care and concern for others. His organization, Aging with Dignity, is a national nonprofit that aims to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. He introduced the Five Wishes will in Florida in 1997, and a year later, to the nation. Today, Five Wishes meets the legal requirements in 42 states, and millions have used the form to specify their desires.

Sources

“Advance Health Care Directives and Living Wills,” Help Guide

“Advance medical directive facts,” Medicine Net

“Cardiopulmonary Resuscitation (CPR),” Family Doctor

“CPR and Advance Care Planning: What You Need to Know,” Allina Health

“Download Your State’s Advance Directives,” Caring.com

“How Misconceptions Among Elderly Patients Regarding Survival Outcomes of Inpatient Cardiopulmonary Resuscitation Affect Do-Not-Resuscitate Orders,” Journal of American Osteopathic Association

“Living wills and advance directives for medical decisions,” Consumer Health, Mayo Clinic

“Medical Issues to Be Considered in Advance Care Planning,” American Hospice Foundation

“What Do a Living Will and Power of Attorney for Health Care Cover?” Nolo (Law for All)

“What is a Living Will?” All Law

How to Find Forms

Living will policies may differ from one state to another. Fortunately, most state governments have designed advance directive forms for people to complete on their own by filling in the blanks. You can also find forms through:

• State healthcare association websites
• National hospice and palliative care organizations
• Community and senior services organizations
• Attorneys handling wills, estates, probate and elder law matters
• Geriatric care managers
• Hospitals or hospice programs

Online, Caring Connections provides free advance directives and instructions for each state.

Your advance directives should be in writing and may need to be notarized, depending on your state law. Once you’ve filled out the forms, provide copies to your doctor, the person you’ve chosen as your health care agent and your family members. Keep another copy in a safe but accessible place. You might also want to keep a card in your wallet that says you have a living will and where to find it (Mayo Clinic).

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