Tag Archives: dementia

Is the media misleading the public on Alzheimer’s?

It seems to be a mixed blessing that the media is paying more attention to Alzheimer’s.

On the one hand, the spotlight on a disease that has long been kept in the shadows is welcomed. But modern journalism’s need for clicks sometimes leads to misleading headlines, which only hurts the awareness movement.

Brain

Recently, a study came out which demonstrated in a very small sample of autopsies of 8 people who had been diagnosed with the rare brain disease, Creutzfeldt-Jakob disease related to growth-hormone treatment, 6 of the 8 showed an increase in amyloid plaque that scientists believe is linked to Alzheimer’s.

It is certainly an interesting study, and the results were unexpected, but there are not any solid takeaways until larger studies can be performed. Yet, in the click-crazy world of online journalism, some outlets ran with the headline, “Is Alzheimer’s contagious?”

I’ve read accounts from those with Alzheimer’s who criticize the use of the term “Alzheimer’s sufferer” because they are doing their best to live successfully with Alzheimer’s and sufferer sounds like there is no hope with anyone with the disease.

I might be guilty of using the term “suffering” when describing my Dad’s experience with Alzheimer’s, but that’s because I truly believe he was suffering. I don’t think it should be used as a blanket term, especially for those in the early stages of the disease.

As a journalist, I try to be aware of these considerations, but I encourage everyone to politely correct those who provide misinformation on Alzheimer’s or any other disease.

The old expression of “all publicity is good publicity” may be true for Alzheimer’s, but it is the responsibility of advocates to make sure the coverage is accurate.

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The $1,800 jacket

Always check pockets before donating or discarding clothing, especially when it belonged to someone with Alzheimer’s!

I have written previously about how Dad was obsessed with money. He carried around a bag of change and would dump it on the bed to sort it. He was paranoid people were trying to take his money so he carried around a large wad of bills wherever he went. The staff at the library Dad frequented told me about this, how they would try to tuck it back into his shirt pocket as it threatened to fall out at any moment.

dad jacket

This behavior is common to those with Alzheimer’s. So is stuffing things into the oddest places.

I finally tackled my parents’ clothes closet in earnest. I thought I had gone through my dad’s jacket pockets on a previous trip, knowing full well his tendency to hide things. We found an old family photo under the couch cushion, and I found letters and photos tucked inside junk mail.

I pulled out one particularly heavy and ratty old coat. I set it down on the junk pile and heard what sounded like the jangling of change. At the same time, I saw a bulge in the pocket. I reached in and pulled out a bag of coins, a lighter, and a large wad of bills.

The bill on top was a $100. I could also see dollar bills and foreign currency in the roll. I figured, okay the top bill was a $100, but the rest will probably be smaller bills.

Well, there were a lot of dollar bills and pound notes, but I was shocked to find the wad of bills was worth over $1,800!

This will make a small but noticeable dent in my credit card debt, so I am very grateful to have discovered it.

When caring for those with dementia, what appears to be trash can certainly turn out to be treasure!

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Glen Campbell documentary ‘I’ll Be Me’ a powerful, profound look at Alzheimer’s

I finally had the chance to see the documentary about Glen Campbell called, “I’ll Be Me.” I highly recommend seeing it, even if you are not a fan of Campbell’s music.

The documentary is an unflinching yet loving look at how Campbell and his family have managed his Alzheimer’s diagnosis. The film once again confirms the power of music. It was amazing to see how long Campbell’s music ability endured, even as he entered the late middle stages of the disease.

The film, made in conjunction with his family, doesn’t shy away from the ugly aspects of Alzheimer’s. Viewers witness Campbell’s temper, repeating questions, communication difficulties, wandering, discussions of incontinence episodes and paranoid outbursts.

Viewers get a behind-the-scenes look at the sometimes chaotic backstage scene before shows. As we all know, those with Alzheimer’s have good and bad days, until they end up with more bad ones than good ones. When you are performing in front of hundreds of people, the good and the bad are magnified.

Campbell is now in the final stages of the disease and lives in a residential care facility.

For Campbell fans it will be difficult to watch one of the greatest guitarists of all times deal with such a debilitating disease, but his phenomenal guitar work is on display throughout the film, as is his sense of humor and his fighting spirit.

If you’ve seen the film, please share your thoughts.

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Guest article: The Disease of Forgetfulness

By Jami Hede of Exploring Dementia


In 1901, German neuropsychiatrist Dr. Alois Alzheimer took up a position at the Institution for the Mentally Ill and for Epileptics, in Frankfurt, Germany. One of the first patients he examined there was a woman named Auguste Deter, who was 51 years old. Just a few years previously, Frau Deter had been a happy wife and mother, living a normal life for the time period. But then she began showing symptoms of memory loss, trouble sleeping, delusions, temporary vegetative states, dragging sheets around the house, and screaming for hours in the middle of the night. Poor Karl Deter had no choice but to admit her to the institution, because he just couldn’t care for her any more, and also continue to work to support their daughter.

In 1996, Frau Deter’s actual medical records were discovered, written in Dr. Alzheimer’s own handwriting (and her own, at times). The neuropsychiatrist made careful and accurate transcriptions of his interviews with his patient, and a short excerpt of them is given here:

“What is your name?”
“Auguste.”
“Family name?”
“Auguste.”
“What is your husband’s name?” – she hesitates, finally answers:
“I believe … Auguste.”
“Your husband?”
“Oh, so!”
“How old are you?”
“Fifty-one.”
“Where do you live?”
“Oh, you have been to our place”
“Are you married?”
“Oh, I am so confused.”
“Where are you right now?”
“Here and everywhere, here and now, you must not think badly of me.”
“Where are you at the moment?”
“We will live there.”
“Where is your bed?”
“Where should it be?”

Dr. Alzheimer asked Frau Deter many questions, including a test of her memory, and also asked her to write her name. She attempted the latter, but repeated, “I have lost myself.” She was then put into an isolation room, and when released ran out screaming, “I do not cut myself. I will not cut myself.”

In subsequent writings, Dr. Alzheimer described his patient as having no sense of time or place, and poor recall for details of her life, made frequent irrelevant and incoherent statements, had rapid and sudden mood changes, and often “accosted” other patients (who would then assault her). He indicated that he had previously seen patients who showed similar behaviors, but they were much older than Frau Deter. He used the term “presenile dementia” to describe her, and stated that she had the “Disease of Forgetfulness.”

In 1902, Dr. Alzheimer took up a position in Munich, where he worked with another neuropsychiatrist named Dr. Emil Kraepelin. (Dr. Kraepelin is quite well-known, in his own right, for work in the area of schizophrenia and other disorders.) He continued to follow Frau Deter’s case, however, and in 1906 was notified of her death, apparently due to sepsis related to an infected bedsore. He requested that her medical records and her brain be sent to him for further study. It was upon examining her brain that he discovered the neurofibrillary tangles and plaques which are now considered characteristic of the disease.

Dr. Alzheimer gave a very significant presentation to the 37 Conference of South-West German Psychiatrists, in November of 1906, in which he discussed the case of one Auguste D. The following year, he published an article in which he described “A serious disease of the cerebral cortex.” However, the person who first coined the term “Alzheimer’s Disease” was Dr. Kraepelin, and not Alzheimer. He first did this in writings published in 1910.

And the rest is history, as they say. Now, the disease which bears Alzheimer’s name is the most common of many different forms of dementia which have been reported since his time.

Source material is from Wikipedia, “The Lancet,” and others. For more informative articles about dementia, visit Exploring Dementia.

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Guest article: Dealing with geriatric depression

By Jesse Waugh

It is normal to experience grief when facing major life changes.

However, for older adults, drastic events can lead to extreme sadness and, ultimately, clinical depression.

Approximately 15% of the elderly suffer from this condition.

If left untreated, depression can last for months and take a toll on the immune system, making the afflicted person mentally and physically weaker.

A geriatric psychiatrist can tell if a person is depressed or experiencing bouts of loneliness and helplessness.

sad senior man

What are the warning signs of clinical depression?

If you think an elderly friend or relative suffers from depression, look for warning signs. There are several health indicators that suggest persistent feelings of sadness.

Withdrawal from society – It is common for elders who experience depression to avoid social situations, even with close friends and relatives.

Loss of self-regard – Putting off personal grooming and proper hygiene may suggest a feeling of detachment and could be a sign of the early stages of depression.

Increased irritability – Sudden drastic changes in an older adult’s mood may suggest the outset of depression.

Amplified physical pain – Contrary to popular belief, depression affects both the mind and the body. Since it weakens the immune system, it can increase physical pain.

Older adults who have suffered from a serious disease or are recovering from a surgery may also be susceptible to depression.

Studies show that around 15% of older patients experience episodes of sadness after they are discharged from the hospital.

What can you do to help?

Keep in mind that depression is an illness. It is much more serious and damaging than grief or sadness. If you suspect that someone suffers from it, keep an eye out for the symptoms or warning signs mentioned above.

Do not attempt to control their lives. If you do things for them that they can do by themselves, you might strengthen their perception that they are helpless or incapable. In fact, many aged care homes do their best to make their guests feel at home and in control of every important aspect of their lives.

Talk to them. This is a good way to alleviate depressive episodes. Just be indirect when you open up the topic of depression. Instead of saying it outright, ask them how they feel. Even if they tell you that they’re fine, they may unknowingly drop hints about how they truly feel.

Basically, you must understand the situation they’re in, and do your best to help them cope with the bouts of extreme sadness. Perhaps one of the most helpful things you can do is keep them company. Loneliness may also be connected to Alzheimer’s, so be there for them when they need you.

Many older adults have successfully recovered from depression without intervention. However, it is best for friends and family of the afflicted person to look into professional help and build a support network. Compassion, empathy and sensitivity can go a long way in the treatment of elderly depression.

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Guest article: Dealing with dementia: What caregivers need to know

By Jesse Waugh from Daughterly Care

Have you been given the rewarding yet challenging task of caring for a loved one with dementia?

Undoubtedly, caring for someone with the affliction can be very demanding both emotionally and physically.

An overall term to describe a dramatic decline in one’s mental ability, dementia can be severe enough to interfere with the patient’s day to day existence.

The following tips will help you care for a patient with dementia effectively, while helping them transition into another phase of their lives with less difficulty.

elderly_woman

Communication
In most cases, people with dementia will find communicating utterly demanding.

Chances are, they will find it difficult to verbalize, write and express their emotions in general.

In some instances, they have the tendency to also lose sight of conversation basics and might end up ignoring or interrupting you in the process.

Bridge the ‘communication gap’ by keeping in mind the following basics.

• Keep calm at all times and give them sufficient time to comprehend what you are trying to say and wait for them to respond to you.
• Make use of touch and other positive body language when communicating and make it a point to remain consistent in your approach.
• Always opt for simple and short sentences when trying to get your message across. Also, try not to argue and be condescending. Keep in mind that they still have emotions and feelings even if they might have difficulties understanding you.

Nutrition

Part and parcel of fitting elderly home care should involve carefully monitoring the patient’s drinking and eating habits.

There is a possibility for people with dementia to forget to eat and drink so keeping an eye on this key element should be considered vital.

Effectively manage their eating and other nutrition needs by taking the following pointers to heart.

• Ensure snacks and meals are offered on a regular basis. While not everyone has the same needs, 5-6 small meals a day is considered ideal.
• When possible, serve foods they are familiar with and patiently demonstrate chewing if the need calls for it.
• In most cases, patients tend to lose a lot of weight especially in the later stages of the disease. With this in mind, consider giving nutritional supplements. Consult a doctor or a dietitian so you will be given appropriate advice as to the supplements that might be helpful.

Aggression
While not true for all, there are instances when patients with dementia will exhibit some aggression tendencies.

Be on top of any possible outburst by practicing the following essentials.

• Inform friends, family and relevant health professionals if the patient displays any form of aggression.
• If fits happen repeatedly, try to observe so you can figure out what the triggers are. Once you identify what provokes the outbursts, it will be a lot easier for you to steer clear of those triggers.
• If the outbursts become frequent and unbearable, ask for professional advice so you will know how to manage it effectively.

While physically challenging and emotionally devastating, you can do much to help make dementia a bit more bearable for the patient. Equip yourself with all there is to know, seek the help and guidance of the right professionals, and you are on your way to managing dementia with ease.

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Guest article: Preparing for at-home care for a loved one with dementia

By Helen White, freelance writer

The decision to try at-home care for a parent or other close relative with dementia isn’t one that’s made lightly. It’s exhausting work, both mentally and physically, and it can be heart-rending for children of parents with dementia to see the changes that the disease brings. If you’ve made the decision, there’s a lot of preparation to be done, both in the home, to create a safe environment, and in the heart, to help you stay strong and able to cope with your new role as care-giver.

Simplifying the Home and Improving Safety

For someone with dementia, even the simplest everyday tasks and items can become fraught with difficulty. Simplifying the home, reducing clutter, and making spaces more accessible is hugely important to prevent over-stimulation and agitation, as well as accidents that may lead to physical harm.

  • Create “walking paths” so that there’s a direct and easy-to-follow path between each room. Remove or tack down any rugs on the floor.
  • Reduce household clutter, both to prevent accidents and to reduce the likelihood of over-stimulation caused by information overload.
  • Improve lighting to reduce dark spots and shadows, which can cause confusion and distress.
  • It may be helpful to label certain areas and items; for example a “bathroom” sign, and labels for kitchen drawers.
  • Add grab bars where applicable in bathrooms (e.g. for the bath, shower, or toilet) and add non-slip flooring or mats.
  • Consider child-proof locks for electrical devices and wall outlets.
  • Secure any rooms or items that are potentially dangerous or breakable—for example, the garage, basement, attic, or swimming pool, computer equipment, and machinery.
  • Add safety locks to any doors that lead outdoors, and install window devices to limit how far they can open.

shower chair

Preparing the home is sometimes a matter of trial and error: you don’t know how your loved one will react to certain things until they’re with you on a daily basis. Initially at least, focus your efforts on safety, and over time you may find there are additional changes you can make to the home to make things more comfortable and calming.

Setting Up a Routine

For someone with dementia, routine is incredibly important. Having a routine helps them make better sense of a world that is increasingly confusing, and it’s important that your loved one knows there are certain things they can rely on, like a mid-morning snack at the same time every day, or a favorite television program each evening. In situations where their loved one has become agitated, having an established routine can also help a care-giver get things back on track and help their loved one calm down.

  • A routine doesn’t need to be strictly regimented and fill up an entire day; it should just provide the day with structure. For example, it might include:
  • Opening bedroom curtains at the same time every morning to signal the start of a new day
  • Meals and snacks, and medications, at scheduled times.
  • Daily activity time, visitors, outings.
  • Shower or bath time before bed.
  • Playing a relaxing piece of music at bedtime.

Don’t Neglect Your Own Self-Care

Caring for a person with dementia is both physically and mentally demanding, particularly for non-professional care-givers taking care of family members. It’s a situation that can lead to exhaustion, burn-out, and even depression on the part of the carer, so it’s vital that you’re able to take breaks on a regular basis, including days and evenings off. So, as part of preparing to bring your loved one home, try and set up a schedule of some kind, to make sure each person who is acting as carer has sufficient time off.

Having a good support system in place from the start is also very helpful. For example, joining a support group for care-giving families can provide a means of expressing emotions in a safe and non-judgmental environment. This is hugely important, because it’s natural for care-givers to feel negatively-perceived emotions like frustration, fear, and sadness, and they need a safe outlet in which to express them.

References

A Place for Mom (March 2013). “Maintaining Dignity for Dementia Patients.” Accessed January 12, 2015. Caring with kindness.

Carol B. Larkin (May 2012). “A Guide to Safe-Guarding Your Home for Alzheimer’s Patients.” Accessed January 12, 2015. Simplifying home and routine.

Aging Care. “Senior Care Products.” Accessed January 12, 2015. Products for at-home senior care.

Help Guide. “Dementia and Alzheimer’s Care: Planning and Preparing for the Road Ahead.” Accessed January 12, 2015. Preparing the home.

Phillips Lifeline (May 2014). “Proper Dementia Care Can Help Patients Remain at Home Longer.” Accessed January 12, 2015. Benefits of at-home care.

Psych Guides. “Living With: A Family Member With Dementia.” Accessed January 12, 2105. At-home care.

Visiting Angels. “Preparing the Home for Senior Care with Dementia or Alzheimer’s. Accessed January 12, 2015. Home preparation.

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