Minding Our Elders®

“PhotoVoice Project” Unique Way to Ease Stigma of Dementia

Dear Minding Our Elders Readers: This project is so unique and, to me has such promise, that I want to give it national attention through posting the press release. I'm hoping other dementia support programs will follow suit. - Carol

Compass on the Bay and Standish Village Showcase the “PhotoVoice Project” A unique, inspiring photography exhibit featuring the works of individuals living with memory loss

October 2012 (Boston, MA)—Compass on the Bay Memory Support Assisted Living in South Boston and Standish Village Assisted Living of Dorchester announce the opening of The PhotoVoice Project, a distinctive exhibit featuring the photographs and writing of older adults living with memory loss.

The Opening Reception for the exhibit is Monday, November 5, 2012 from 3:00-6:00pm at the South Boston Library, 646 E. Broadway, South Boston. The public is invited to attend to view the works and will have an opportunity to meet the artists. The exhibit will be up through the end of the month.

The PhotoVoice Project was developed by several researchers at the University of Michigan to enable individuals with disabilities to identify, represent and articulate aspects of their lives by working with cameras to capture images of interest and then giving meaning to those images through words.

Transportation for Seniors Can Ease Driving Transition

Most of us with aging relatives will eventually face the “how do we stop them from driving” problem. To many people, driving a car equals independence. One reason for that is the lack of convenient public transportation in much of our country. Very large American cities such as New York, plus most of Europe’s large cities, generally have good public transportation, so people who don’t drive aren’t stranded. But across the country, accessible public transportation for elders is hard to come by.

My own high plains state is especially poor at providing affordable public transportation. There’s an “everyone has his own horse” mentality. True, the metro areas have elder commissions that often provide senior vans, but this can be costly for many seniors and doesn’t allow for spur of the moment trips. For most seniors, taxi rides are financially out of reach. Para-transit buses for the disabled are available, but like senior van rides, they often are costly and they must be scheduled. All of these services are better than nothing, but they are hardly ideal.

Read more about the importance of providing transportation for seniors:

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Mother’s Cognitive Changes Frustrate Daughter

Dear Carol: My mother’s dementia is taking a toll on both of us. There are times when she doesn’t understand what is happening around her, so she gets angry, calls me names and even accuses me of stealing. Other times, she seems very clear, but those times are almost worse for me because she says things like “Just give me something to end this.” Five minutes later, she’s back to being mad at me or anyone else near her. I don’t know which extreme is harder to cope with. Isn’t there a way to find some middle ground with this disease? - Jan

Dear Jan: I understand and strongly sympathize with your desire to get things normalized again, since I’ve been in similar situations myself. This is a high wire act with a lot of discomfort. While there may be no effective treatment, there are ways to try and manage things.

Read more about cognitive changes and how to cope:

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Alzheimer’s Disease Doesn’t Only Affect Aged

Receiving an Alzheimer's diagnosis at the age of 75 can be a crushing blow. Imagine, then, what it would be like to receive such a diagnosis when you are 35, 40 or 45-years-old? You're at your prime in many ways because you've got experience in your work, yet are nowhere near retirement. You have children, maybe yet in grade school. You've got a mortgage, car payments and plans to travel when your kids are older. You're on a roll - until you realize that you are forgetting things. Important things. Eventually, you see a doctor and the diagnosis is early on-set Alzheimer's disease.

Read more about Alzheimer's disease affecting younger people:

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FDA Approves More Research Into Deep Brain Stimulation for Alzheimer’s

There’s good news on several fronts involving the promise of deep brain stimulation as a way to halt the progression of Alzheimer’s disease and improve memory. It’s done by implanting electrodes that send pulses of electricity into the brain's memory system delivering small, rhythmic shocks.

ABC News recently reported on a Canadian study that has shown that deep brain stimulation can reawaken circuits in the brain that lay down memory. People in the clinical trial had two electrodes implanted in the brain, which are connected to a battery implanted in the chest area. The brain is stimulated by these electrical impulses, “sparking” the memory center into activity.

Read more about deep brain stimulation for Alzheimer's disease:

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Alzheimer’s Drugs to be Compared Side by Side in New Trials

Researchers leading the Dominantly Inherited Alzheimer's Network (DIAN) recently announced that two pharmaceutical companies have agreed to donate investigational drugs to use in side by side trials in people who are destined by genetics to develop early-onset Alzheimer's disease. The companies have agreed to at least partially fund a five-year therapy trial, as well. 

Read more about Alzheimer's drug trial:

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CMS Presents a Videos for Caregivers Addressing Medication Issues

Caregivers tend to spend significant time digging for useful information to better care for their loved ones, a need which often escalates when the care receiver transitions from one care setting to another. During these transitions, caregivers often need additional guidance, especially in handling medication changes. To help with this issue, the Centers for Medicare and Medicaid Services (CMS) has partnered with the United Hospital Fund of New York's Next Step in Care campaign. Together, they have produced a series of educational podcasts with a focus on helping caregivers make decisions about their loved one's medication transitions.

Read more about how to handle medication questions for someone on Medicare:

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Proposed Settlement May Expand Medicare Coverage for Important Services

In a proposed settlement of a nationwide class-action lawsuit, the Obama administration has agreed to change the decades-old practice of denying Medicare coverage for skilled nursing care or physical therapy unless the patient could be shown to have a likelihood of medical or functional improvement.

According to a story in the New York Times, “Federal officials agreed to rewrite the Medicare manual to make clear that Medicare coverage of nursing and therapy services does not turn on the presence or absence of an individual’s potential for improvement, but is based on the beneficiary’s need for skilled care.”

Read more about changes in Medicare coverage for in-home nursing care and physical therapy:

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How Do We Get Dad to Participate at Adult Day Care?

What do you do with Dad when he sits alone at adult day care and sulks? How do you get Grandma to participate in the activities the nursing home provides? These scenarios often take us back to the days when our children entered kindergarten and hid in the corner, out of shyness. But there is usually something quite different going on with a senior who refuses to participate in appropriate activities often welcomed by his or her peers.

Frequently, these same elders complain of boredom. A friend’s mother had been a very social person. She had a phone in her room in the nursing home. She had many visitors. The mother knew the staff well, as she’d been there for several years. She would do her daily puzzles, watch some TV and call her friends. But she wouldn’t do anything with others at the nursing home. She, quite frankly, considered herself “better” than the rest. Not in social status, but in mental and physical health. She refused to join in with all those “old people.”

Yes, some of the live music on Friday’s was a type she didn’t like. But, on occasion, someone would come and play piano music – and this woman had been a wonderful pianist. She would have enjoyed the music, if only she’d have agreed to go down with the others and listen. But she refused.

Lactose Intolerance Can Sneak Up on Elders

Dear Readers: Several years ago, I used this space to highlight lactose intolerance, an issue many older adults face. Due to some recent questions, I felt it was time, once again, to share some anecdotes regarding this sometimes hidden problem.

Many of our elders enjoy milk, ice cream and other dairy products. In general, dairy products can provide valuable nutrition and needed calories, but dairy products contain lactose, a milk sugar that requires the enzyme lactase for proper digestion. Even people who’ve enjoyed dairy products for decades can gradually lose their ability to produce enough lactase to digest milk or other dairy products. When this happens, abdominal discomfort and diarrhea can result.

Read more about lactose intolerance:

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How Helpful Will FDA Approved Test for Alzheimer’s Be?

The contradictory nature of new studies and approaches to fight Alzheimer’s disease can be mindboggling. Just as a new approach seems to show great promise, follow up information can seem to throw cold water on it, diminishing the promised results.  Case in point: on April 9, 2012 a Wall Street Journal online article announced that the FDA has approved a test a that detects protein levels in the brain indicating Alzheimer’s disease. 

The test uses a chemical developed by Eli Lily, combined with a PET scan. The article says that “...a chemical called florbetapir, known by the brand name Amyvid, which is a radioactive agent that tags clumps of a sticky substance called an amyloid...hallmarks of Alzheimer's disease. The chemical…then is detected using a brain imaging technique called positron emission tomography, known as PET scans.”

Read more about FDA approved testing for Alzheimer's:

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Chronic Inflammation Shows Strong Link to Alzheimer’s According to Study

Acute inflammation is the body's natural response to tissue damage. Its purpose is to defend the body against harmful substances, dispose of dead or dying tissue and to promote the renewal of normal tissue. Therefore, inflammation is normal if we are ill from a virus or bacterial infection or we injure ourselves.However, chronic inflammation is different. Chronic inflammation is involved in many autoimmune diseases including rheumatoid arthritis, allergies and even some cancers. Mounting evidence is now showing that chronic inflammation is also likely part of the Alzheimer’s puzzle.

Read more about chronic inflammation and Alzheimer's:

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Training Frontline Caregivers Essential to Care

A few years back, I had a chance to go through a rigorous caregiver’s experience by attending “Dementia Boot Camp.” Though I felt I was as good a caregiver to the multiple elders in my family as I could be, this experience, which through a combination of high and low tech methods threw me into the world of helplessness that dementia patients feel, was life changing. 

For those who want a look into how their loved ones who are extremely vulnerable must feel, read Dementia Boot Camp Part 1 and Dementia Boot Camp Part 2. By doing so you will travel the road with me  as I fumbled my way through a mind-boggling experience of feeling utterly unable to help myself, even though I knew I could stop the experiment at any time.

Read more about the value of frontline caregivers to our loved ones:

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Family Caregivers Provide Nursing Services with Little Professional Support

According to Carol Levine of the United Hospital Fund, a longtime researcher and caregiver herself, and Susan Reinhard of the AARP Public Policy Institute, few non-caregivers have any real idea of how much care an in-the-trenches family caregiver provides. 

In a story by Paula Span on the New Old Age Blog titled  “Caregiver, Plus M.D. or R.N.”, Carol Levine is quoted as saying, “The public perception is what you see in ads — people sitting by the bedside, holding hands, making lunch, smiling at one another…It has that glossy look. That’s not the whole story.” 

Family caregivers these days give medications that have precise and often complicated schedules. Many give injections and some use feeding tubes and dialysis equipment. Often, they have had little or no training and no reliable resource to answer questions. These duties, once the territory of nurses, are keeping loved ones out of nursing homes longer, but caregivers are stressed more than the general public can imagine. 

Read more about the survey and encouragement for changes in caregiving:

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Tai Chi shown to boost brain size, increase memory in Chinese seniors

Could non-aerobic exercise help prevent Alzheimer’s and other dementia? Possibly. A recent article in The Atlantic reported on a study involving a group of seniors residing in Shanghai, China and the practice of the ancient art of tai chi as a way to prevent Alzheimer’s.

Tai chi, as described by the Mayo Clinic website, is “… a noncompetitive, self-paced system of gentle physical exercise and stretching. To do tai chi, you perform a series of postures or movements in a slow, graceful manner. Each posture flows into the next without pause, ensuring that your body is in constant motion.”

Read more about Tai Chi and increased memory capacity:

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Helping Aging Parents from a Distance Is Challenging

Dear Carol: I live 500 miles away from my aging parents.  They are starting to need some help, but they don’t want to move to be near me. My husband and I can’t quit our jobs and move back to our home town, either. How do I go about looking for help for Mom and Dad from so far away? – Lori

Dear Lori: One option is to look for a geriatric care manager in your parents’ community. Hiring a geriatric care manager can run into some serious money, but a care manager should be well acquainted with resources available locally for your parents. Some care managers will work directly with your parents, even managing medications. Others will provide research and oversight, but not be involved with any hands-on care.

Read more about long-distance caregiving and how to get help for your loved ones:

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Cancer Drug Disables Toxic Alzheimer’s Protein gSAP

The anti-cancer drug Gleevec has been shown to disable a newly discovered key protein linked to the development of Alzheimer’s. The protein, gSAP, stimulates production of toxic beta-amyloid which is linked to the development of plaques in the brain typically associated with Alzheimer’s disease.

Dr. Gen He and Dr. Paul Greengard, both of the Fisher Center for Alzheimer’s Disease Research, have identified gamma secretase activating protein (gSAP). They’ve found that gSAP stimulates an enzyme called gamma secretase that is responsible for producing beta-amyloid. The researchers also discovered that the anti-cancer drug Gleevec binds to gSAP, preventing it from activating gamma secretase.

Read more about the new discovery and the way an existing cancer drug works with AD protein:

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Can Caregivers Be Subject to Abuse by Care Receivers?

When we think of domestic abuse in a family where elders are cared for, we generally think that the elder is the most likely person to suffer abuse. Statistics would probably prove this to be a fact. However, there are many caregivers who can truthfully say that they are emotionally, verbally and even occasionally physically abused by their care receiver.

Being in a vulnerable state of health doesn’t necessarily turn a person who was historically abusive to family members into a sweet lamb. Even the best of us can get cranky when we don’t feel well. The frustrations of dementia can be even harder to cope with than physical pain. Good people can become hard to deal with when faced with these issues.

Read more about abusive care receivers:

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Elders Vulnerable to Abuse in Domestic Situations

Most of us want the best possible care for our aging parents. There are many ways to provide good care, one of which is bringing our parent or parents to live with us, or taking our family to live with them. Sometimes that works out wonderfully. But sometimes it doesn’t. Not everyone is cut out for the day to day stress of hands-on caregiving, let alone 24-hour caregiving in their own home. What can start out as a loving gesture can end up a nightmare.

Stress can push caregivers over the edge. Even if a caregiver has had a great relationship with his or her parents, when the stress of working a regular job, perhaps raising children, common financial problems, and giving proper attention to a marriage merge with caring for an aging parent – perhaps one who has Alzheimer’s disease or other dementia – the stress load can become unbearable.

Elders can be subject to abuse in home situations:

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When the Caregiver Is Diagnosed With Breast Cancer

...A mentally and physically sharp woman in her early 70s, was caring for her husband of many decades who was suffering from Alzheimer's disease. The wife was coping as well as could be expected. She also was doing what many caregivers do. She was ignoring her own health needs.

Read about a caregiver who is diagnosed with breast cancer:

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