72
  • Emailarticle
  • Writecomment

Hope for Families Coping with Alzheimer’s and Dementia

By MARILYN SOLTIS

A doctor suffering from Alzheimer’s believes that he is still practicing medicine but in reality he lives in a dementia care facility.  A charismatic former politician refuses to go to the dining room for meals. A lonely woman sits quietly throughout  the day gazing out the window. 

In the recent past these people might have been controlled with medications or supervised without real engagement. But senior care professionals are learning that real communication is possible and people suffering from cognitive impairment can still find joy, participate in life, and feel productive. And that knowledge is available to anyone impacted by a loved one stricken with some form of dementia.
 
Silverado opened its 21st licensed freestanding dementia care community in Lake Zurich this year. Empowering the staff to create a loving, positive environment and family engagement is the goal of every day. “We start every morning meeting with a success story,” says Pam Bradley, Administrator of Silverado.
   
It starts with a happy, involved staff. “We incorporate the children and families of our associates, the caregivers, cooks, and maintenance people. Even pets. Our housekeeper brings her son to help us with arts and crafts and exercise. The kids think it’s a great place. Older people love them. Some pets have moved in. Already we’ve adopted four cats, two dogs and some guinea pigs,” she says
   
“With Alzheimer’s it doesn’t matter if you have memory impairment or can’t walk to feel love. We feel that having Alzheimer’s does not mean the end of living.” Sliverado’s goal is to reduce medication, if possible, and help people regain some independence, improve behaviors, and prevent falls and injuries.
     
A sense of feeling productive is crucial to some people with the disease. The doctor who thought he still practiced? The Silverado staff gave him a small office and the responsibility of taking the blood pressure of many of the associates. The politician used to give eloquent speeches in his former life. At dinnertime he is told it is time for his speech. He makes a short speech and sits down to enjoy his dinner.
   
And the lonely, quiet woman‘s life improved when she adopted two cats. “She’s so proud and excited to be taking care of two cats. We knew she would flourish. She had her hair done and is walking taller,” says Bradley.

Living at Home—With Help

A person diagnosed with dementia can live for seven to 18 years. In-home care is possible in many cases and is more affordable than the cost of a nursing home.
   
Senior Helpers, an in-home care company for seniors, with 300 franchises across the country, provides a variety of care such as bathing seniors, monitoring medications, running errands, cooking meals, or simply keep the senior company. The average cost for in-home, non-medical care is $19 per hour. Four hours a day for five days a week comes to $19,760 per year, giving family caregivers a much needed break.
 
This fall the company is rolling out a new training program for their employees and developing a CD for families to help them properly care for their elderly loved ones. The Senior Gems Program is based on the teachings of Alzheimer’s and dementia care specialist, Teepa Snow, and breaks down the stages of the disease into six progressive stages and how to better understand ways of communicating and relating.
 
Christina Chartrand, Vice President of Training and Staff Development at Senior Helpers says that Snow’s approach changed her entire process of looking at client’s needs. “I thought it was a memory issue but it’s really brain failure. At mid-stage they lose one in four words so you can use more visual clues. Hold up pictures of hamburger or lasagna. Folding laundry is a productive activity in the middle stage. It keeps them active and makes them feel good,” she says.
 
Her previous way of thinking was much different. “There was a baker with dementia who got up every morning at 5 am and he would want to go downstairs. So we blocked the stairs. He was very agitated—he needed to make donuts,” she says. “We could have just given him flour and water for donuts. How much more meaningful it would have been for him to have something for the day.”
 
One phrase the company is teaching their staff to eliminate is “you don’t remember.” Little things like that can make a difference in a day.
 
Chartrand stresses the urgent need to wake up and talk about dementia and to get early diagnosis. “It’s a devastating disease that no one wants to talk about. Remember Ronald Reagan? He disappeared,” she says.
 
Education is needed to understand the difference between aging and dementia. Chartrand says, “It’s okay to lose your car keys, search all over, and then find them right in front of you. I’d worry if they’re in the freezer.”

Mild Cognitive Impairment

When memory, language and other cognitive abilities are impaired, many people can still function with proper support.  As baby boomers age, MCI will increase. As many as 10 to 20 percent of those aged 65 and older have the condition and nearly half of those will progress to dementia in less than five years.
   
Belmont Village’s Circle of Friends program was developed to boost cognitive reserve in assisted living patients and was awarded an Honorable Mention with the 2011 George Mason University Healthcare Quality Improvement Award. The program is a seven-day-a-week program of socialization, maintaining cognitive function and boosting self-esteem and confidence. Exercises are designed to engage the hippocampus, which is the area of the brain that controls memory, and the fronto-temporal regions of the brain which control reasoning and judgment.
 
“We’ve moved away from the leisure model for independent and assisted living. It turns out that if you just relax and play cards and shuffle board, it’s not good for you,” says Beverly Sanborn, a dementia specialist with Belmont Village. She says there are steps that research suggests can delay symptoms. “The brain is compensating for loss of cells and building new neuro-connectors. Our goal is to maintain. The surprising thing is some people actually improve.”
 
Sanborn relays some important actions people can take to maintain and even improve cognition:

Exercise—Work out with weights three to four times per week. A recent meta-study showed that the average woman over 70 years of age cannot lift 10 lbs. with one hand. “If you don’t go to a gym, get some resistance bands and a CD and just follow the instructions,” says Sanborn. “Exercise for balance and core muscles. You should be able to get up from the chair without holding on to the sides.” Top it off with 45 minutes of aerobics a day such as elliptical, rowing machine, exercycle and treadmill.

Diet—Emphasize colorful fruits and vegetables. You don’t have to be a vegetarian but have minimal red meat and focus on creatures that swim and fly.

Mental fitness exercise—Exercise the brain in specific ways. Learn something new like a language or a computer program. Follow complicated cooking
recipes. Do any kind of craft that requires multiple steps. Learn to square dance—you have to memorize the steps and do them when you hear the music. Play bridge and poker and word games like Scrabble.

Exercise long term memory—This is more than reminiscing. Get books on historical trivia. Quiz yourself on how much you remember.

Socialize—Don’t be a hermit.

Do the math—Try some math analysis games and games that involve logical analysis.

Finding Support: Alzheimer’s Association—Illinois Chapter

“Over 70 percent of people with dementia live in a community with family or alone,” says Melanie Chaven, VP of Program Services at the Illinois chapter of the Alzheimer’s Association which serves 68 counties through six offices in Chicago and collar counties. There are 210,000 people afflicted with Alzheimer’s in Illinois.
   
The organization oversees between 80 and 100 support groups for caregivers and people who have family members with the disease. “There has been so much research that talks about the burden of the caregiver, especially those caring for someone with dementia. They are dealing with multiple losses and financial stress. Caregivers often end up neglecting themselves,” says Chaven.
   
Peer support can help immensely. While there are many online resources with message boards and chat groups, Chaven says there is almost always a need for the caregiver to get out of the house and sit with other people. “Talking to a professional is one thing—it’s a whole other level of people who have walked in their shoes,” she says.
   
The association also offers a wealth of information through its website about the kinds of care options, planning ahead, coordinating care and other support and resources. As the largest private, nonprofit funder of Alzheimer’s research, alz.org has a summary of the latest research presented at the international conference as well as updates on all of the latest scientific findings.
   
“Call the 24/7 helpline if you are overwhelmed or just need support,” says Chaven. 800-272.3900, alz.org.


National Memory Screening Day—November 15

Last year over 60,000 people had free, confidential memory screenings on National Memory Screening Day, an annual event held by the Alzheimer’s Foundation of America in collaboration with local organizations and healthcare professionals across the nation. They are hopeful that even more people will get screened this November 15.
   
There are an estimated 5.2 million Americans suffering from Alzheimer’s disease and the number is expected to triple by 2050, with 11,000 Baby Boomers turning 65 every day in this country. It’s a disease most people don’t want to discuss.
   
We don’t know how to talk about our cognitive decline,” says Eric J. Hall, President and CEO of the Alzheimer’s Foundation. “We’re not very good at describing it.  The screening takes seven to ten minutes to get a sense of cognitive capacity. Many causes are reversible. We’re not even looking for Alzheimer’s but it’s an opportunity to get educated.”
 
Some mild, cognitive impairment may be caused by conditions that are more easily treated like vitamin B12 deficiency, depression, underactive thyroid or medication side effects. There are many other causes like Parkinson’s, stroke, brain tumor to name just a few.
   
The screeners do not attempt to diagnose anyone. The screening will simply indicate whether a person would benefit from a more extensive exam or alleviate the fears of others. It’s also an opportunity to share much-needed educational materials. It’s completely confidential. “We started this in 2003 and we have no follow-up statistics. There are no records or names on the score cards,” says Hall.
 
“We’re not testing fast enough. With better education there is more diagnosis taking place. People need to understand that treatments are available that can slow the progression. Early diagnosis is critical for a family. They can be thrown into turmoil and early diagnosis gives families a chance to plan,” he says.
 
“There is a vast amount of suffering. For every person with Alzheimer’s, there are one to four primary caregivers. There are so many people who need so much more in the way of support. If I had one message to convey,” says Hall, “it would be that folks need to know they are not alone. We have a hotline and infrastructure of 1600 member organization. We can ease the burden of the journey and we can give support every step of the way.”
   
Memory screenings are held at Alzheimer’s Agencies, doctors’ offices, hospitals, senior citizen centers, houses of worship, pharmacies and community organizations. For information about        
National Memory Screening Day, including screening sites, visit www.nationalmemoryscreening.org or call 866-AFA-8484.


Cost of Care

Nursing Homes: Provides skilled nursing care, 24 hours a day. Average Cost: $78,000/year.

Independent Living Facilities: Provides house, meals, personal care and 24 hour supervision. Average cost: $42,000/year.

Assisted Living: Provides “hands-on” personal and medical care for those who are not able to live by themselves, but do not require constant care. Average cost: $39,000/year.

Continuing Care Communities: Require a contract in advance for a lifetime commitment from the community to care for the senior. Entrance fees range from $20,000 to more than $400,000. In addition, seniors pay a buy-in fee to the community and monthly maintenance fees.

Source: Genworth Financial 2011 Cost of Care Survey, journal Health Affairs (July 2011)


Studies

• A spray of insulin deep into the nose was found to temporarily show improvement in the memory of Alzheimer’s patients in a small study of 104 people published in the Archives of Neurology.

• People with diabetes and pre-
diabetes are at higher risk of
developing dementia, including Alzheimer’s, according to
researchers.

• A recent baby boomer study by the UCLA Center for Health Policy showed that 60% worry about their ability to pay for healthcare in general and long-term care in particular; two-thirds of those surveyed said they couldn’t afford more than three months of care.

• Scandinavian research scientists at SINTEF, an independent research organization, are developing a technological social media interface that is simple enough for people with dementia to use. Constant simple contact to relatives and support services can improve security for elderly with dementia.

• A UCLA study found that caregivers who live with their care-giving recipients spend nearly 36 hours of time on care-giving. They also found that 62 percent of care-givers work full or part time as well.

• According to researchers at the University of New South Wales, humor therapy can be as effective as anti-psychotic drugs to reduce agitation for those with dementia. More than 70 percent of people with dementia suffer from agitation.

The World Alzheimer’s Report 2011


 The World Alzheimer’s Report 2011 “The benefits of Early Diagnosis and Intervention,” released September 13 by Alzheimer’s Disease International (ADI) shows the benefits of intervention in the early stages of Alzheimer’s Disease
 Key Findings of the Report

  • Dementia diagnosis provides access to a pathway of evidence-based treatment, care, and support across the disease course.
  • Perhaps as many as 28 million of the world’s 36 million people with dementia have yet to receive a diagnosis, and therefore do not have access to treatment, information, and care.
  • The impact of a dementia diagnosis depends greatly upon how it is made and imparted. Evidence suggests that when people with dementia and their families are well prepared and supported, initial feelings of shock, anger and grief are balanced by a sense of reassurance and empowerment.
  • Earlier diagnosis allows people with dementia to plan ahead while they still have the capacity to make important decisions about their future care. In addition, they and their families can receive timely practical information, advice and support. Only through receiving a diagnosis can they get access to available drug and non-drug therapies that may improve their cognition and enhance their quality of life. And, they can, if they choose, participate in research for the benefit of future generations.
  • Most people with early stage dementia would wish to be told of their diagnosis.
  • Improving the likelihood of earlier diagnosis can be enhanced through: a) medical practice-based educational programs in primary care, b) the introduction of accessible diagnostic and early stage dementia care services (for example, memory clinics), and c) promoting effective interaction between different components of the health system.
  •  Early therapeutic interventions can be effective in improving cognitive function, treating depression, improving caregiver mood, and delaying institutionalization. It is simply not true that there is ‘no point in early diagnoses or that ‘nothing can be done’. Some of these interventions may be more effective when started earlier in the disease course.
  • Available evidence suggests that governments should ‘spend to save’ – in other words, invest now to save in the future. Economic models suggest that the costs associated with an earlier dementia diagnosis are more than offset by the cost savings from the benefits of anti-dementia drugs and caregiver interventions. These benefits include delayed institutionalization and enhanced quality of life of people with dementia and their careers.

 Source: The World Alzheimer’s Report 2011 “The Benefits of Early Diagnosis and Intervention.”


Published: October 01, 2011
Issue: November 2011 Issue