Dementia Care Notes: Excellent Resource for Caregivers by Swapna Kishore

Dementia Care Notes!: Resources, tips, caregiver stories for dementia caregivers in India

This DEMENTIA CARE NOTES® site offers information, resources, and caregiver stories that could help dementia caregivers. It is intended for family caregivers of persons with dementia, friends, colleagues, and anyone concerned about dementia care in India.

Most families don’t know that dementia cannot be cured. No medicine can slow down the diseases causing a patient’s dementia. That is, no medicine can slow the rate of brain damage. Some medicines give some relief from symptoms for some forms of dementia, but these don’t help all patients. Dementia goes on for many years and the patient needs more and more help with time. Given that medicines give only limited relief, good care is very important for the patient’s well-being. If families understand dementia, they can find better ways to plan and provide care. Everyone will be less stressed.

Many caregivers are confused by conflicting explanations of dementia. One such aspect is how dementia affects persons. Some reports show dementia patients as passive persons, unable to do anything; phrases used include “not quite there” or “absent”. This is misleading. Persons with dementia can lead active and fulfilling lives if given suitable support. Some other reports show patients as unreasonable, agitated, and violent. But not all patients show agitation or other worrying behavior. Also, many factors affect behavior and worrisome behavior can be reduced by adjusting things like the patient’s environment, activities, and interactions. The Dementia Care Notes site provides information to help families understand dementia and care. We also include relevant links and resources. We hope this will make the dementia care journey smoother and more effective for everyone.

Visit the website: http://dementiacarenotes.in/

Caregivers Take Note – Music as Therapy

When Glen Campbell took the stage at the Grammy Awards and accepted his Lifetime Achievement Award, he did so as one of the more than 5 million Americans diagnosed with Alzheimer’s disease.  What is inspiring about the 75-year-old Campbell’s Grammy night appearance is that he has not retired from his love of making music despite his recent diagnosis.  In fact, he is starting his Farewell Tour and is cutting a new album.

Is music one of the keys to a longer, happier life – despite your health issues?

The news about Campbell got me thinking about studies and articles I have read about music therapy.  Although music has been with us since the dawn of time, in the last few decades studies have found that music as a therapeutic tool can increase cognitive function in Alzheimer’s patients, help premature infants gain weight, encourage autistic children to communicate, lead stroke patients to regain speech and mobility, control pain for dental, surgical and orthopedic patients, and manage anxiety and depression for psychiatric patients.
Dr. Oliver Sacks, a renowned neurologist and psychologist at Columbia University Medical Center best known for his 1973 book Awakenings, which became an Academy Award-nominated film starring Robin Williams and Robert De Niro, and who also wrote Musicophilia: Tales of Music and the Brain, testified at the Hearing before the Senate Special Committee on Aging entitled, “Forever Young: Music and Aging,” and issued this statement:

“The power of music is very remarkable… One sees Parkinsonian patients unable to walk, but able to dance perfectly well or patients almost unable to talk, who are able to sing perfectly well… I think that music therapy and music therapists are crucial and indispensable in institutions for elderly people and among neurologically disabled patients.”


The Magic Brain Workout Is Music

Since music is associated with one of the five senses — hearing — which is controlled by the brain it makes sense that we should exercise our brains with music listening to spur cognitive function in the same way we use physical therapy to exercise our limbs, muscles and joints to regain mobility and physical function.
When it comes to Alzheimer’s patients, studies have shown that music reduces agitation or improves behavioral issues such as violent outbursts.  In one pilot program, 45 patients with mid- to late-stage dementia had one hour of personalized music therapy, three times a week, for 10 months, and improved their scores on a cognitive-function test by 50 percent on average. One patient in the study recognized his wife for the first time in months.  Another music therapy study showed that stroke victims can learn to walk and use their hands again.

 Read More :
Caregivers Take Note – Music as Therapy » Alzheimer's Association | Blog

How to Get An Alzheimer's Patient to Bathe

 Doctors recommend older adults shower or bathe a minimum of twice a week to reduce the chance of infection including urinary tract infection.

Many Alzheimer's caregivers face this common problem, how do you get a recalcitrant dementia patient to bathe or shower?

It is not uncommon for a caregiver to want to "pull their hair out over this one".

Here are a list of tips that might help the task of bathing go easier :

• Doctors recommend older adults shower or bathe a minimum of twice a week to reduce the chance of infection (especially UTI’s in women). If you can get them to bathe more, kudos to you. If not, be satisfied with twice a week, unless another medical condition demands more frequent bathing.
• To combat the “NO’s” try to make it seem as if the request is just a routine part of daily life as in, “It’s Tuesday morning. We always take our bath on Tuesday morning. Let’s go get cleaned up, and then I’ll make you a nice breakfast.”
• Follow up on the positive reinforcement (as Bob calls it), so that your loved one does get rewarded for complying. Doing this over and over, as part of the regular routine, imbeds in your loved one the behavior you want to happen. Yes, it can be done with enough practice! ALWAYS PRAISE AND COMPLEMENT THEM AFTER THE BATHING IS DONE.
• Have everything ready (soap, shampoo towels, washcloth, etc…) in advance, all laid out ready to go. The room temperature is warm, maybe soft music is playing. You say something on the order of “your bath is ready for you. Here, let me help you with your shirt (or shoes, or whatever). Start helping, turn the water on in the tub and temper it and say something like “madam (or sir) you spa awaits you.”
• If there is no other way to get them to bathe. Ask their doctor to write on a prescription pad something like this: “Mr. So-and-so needs to bathe two times a week for infection control”. Make several copies of the prescription (in case they tear it up). Show the prescription to them and say “Doctor’s orders”.
• The bathing should take place at the time and in the manner the person always used to bathe, meaning if they were a morning before breakfast bather, then you should have them bathe in the morning before breakfast. If they were a shower person, then they should have a shower, not a bath, unless medical or physical reasons preclude that.
• Some persons with dementia actually grow afraid of the water, especially water coming out of a wall mounted shower head. It becomes threatening to them. If this is the case consider getting a flexible hand held shower head. That way you or your loved one can control where it sprays on them.
• Allow your loved one to do as much as they possibly can to wash themselves while in the bath. If they can do a credible job on their own with just reminders from you to wash here and there, let them do that. Even if they don’t do a credible job and you have to redo the washing, I suggest you have them wash themselves first. It gives them “ownership” of the task and gives them something to be successful at Even if all they can do is hold a washcloth while you do everything else, let them do that. At least they are participating in the task as much as they can. The same goes for hair washing.
• The same advice goes for drying themselves. Allow them to do as much as they can, even if you have to go back over what they have done. ALWAYS PRAISE AND COMPLEMENT THEM AFTER THE BATHING IS DONE.
• Some people need to be distracted with something while you give them the bath or shower. Distractions that could be used are singing in the shower, giving them something colorful to hold and look at while in the shower (or several somethings to hold and look at) such as a squeeze ball or a shower scrub in the shape of an animal.
• Some people are extremely modest, be aware that that may be the reason for saying “NO”. Respect their dignity by allowing them to cover up with something while in the shower. Perhaps a towel or a sheet or even a poncho. Just wash under whatever they use to cover up.
• Safety comes first. There need to be grab bars positioned for them to hold on to while getting in and while bathing. Their needs to be appliqués on the shower or tub floor to give them traction under their feet.

Keep these additional tips in mind:

I’m not fond of bath mats. I’ve seen them lose suction and slide under the person’s feet too often.

If the person is unsteady, a shower chair is needed. I’m not a fan of using the bedside potty chair as a shower chair because using it in the shower tells that person that it is ok to go to the bathroom in the shower or bath.

If the person is scared to get into the tub because they have to step over the tub wall, try using a “transfer board”. It is a fairly long straight plastic board that you place in the tub with one set of legs outside the tub and the other set of legs inside the tub. Your loved one sits on the outside part and you help slide their behind to the inside part (and lifting their legs over the tub wall, of course). Poof fear of falling is gone.

Finally, after the bathing is completed and, your loved one is dressed PRAISE AND COMPLEMENT THEM and ask them to cross off that day on a year long calendar showing the year by months. Have them do this every time. Eventually you will have visual proof that they have taken their shower or bath every Tuesday and Friday (for example) for months and that it is a normal thing to do.

It also squashes the “I took a bath/shower earlier today or yesterday” protest. Nothing works like visual proof.

By Carole Larkin MA,CMC,CAEd,QDCS,EICS

Source: http://www.alzheimersreadingroom.com/2011/04/how-to-get-alzheimers-patient-to-bathe.html

What Is Alzheimer's Disease? Check this Excellent Video

These very-short "pocket" films are designed to be viewed anywhere at anytime: a doctor's office, Parliament , a family living room. Please take them. Put them on your own website or powerpoint presentation; play them on your phone or tablet. They are free for non-commercial use.

Twelve steps for care-givers

Care-givers and caring

The immediate family members of patients are often elderly themselves and have their own medical problems. The care-givers should never neglect their own health as their well-being is vital for appropriate care of the patient.

It has been said about Alzheimer’s disease that although the patient has the disease, the family members suffer the most.

In the cultural context of the Member Countries of South-East Asia, care of Alzheimer’s disease patients is best provided by lay care-givers. These lay care-givers should be specifically trained in patient care. They must understand what Alzheimer’s disease is, and what the patient is capable or incapable of doing. Ideally, continuity of care by the same care-giver is desirable, but this may not be practical. The "fatigue factor" of care-givers also needs to be taken into consideration. Immediate family members should be available to extend psychological support and supervision of lay care-givers. It is not necessary for them to do the physical work themselves.

It has been reported that almost half the patients in a study undertaken in Mumbai, India, were either single or widowed. This finding is significant as research workers came across patients who, having nobody to take care of them, were being looked after by neighbours. Clearly, there is a pressing need for state and community organizations to create the infrastructure necessary for the care of such persons. Ironically, none of the residential institutions for the elderly were willing to take in persons diagnosed with Alzheimer’s disease. Since the patients are looked after by their families until the time of death, there is a tremendous need for the education of care-givers and other forms of support. Without this, there is a high risk of patient neglect.

Management of patients of Alzheimer’s disease

While there is no specific cure for Alzheimer’s disease, there is a need to look after the patients as well as their care-givers. Non-pharmacological interventions and the use of residential and domestic resources, such as day care, respite care and nursing home care, may reduce symptoms and suffering. Another important factor is financial and legal counselling essentially needed to preserve income and take decisions affecting the whole family.

In the early stages of Alzheimer’s disease, when intellectual function is reasonably preserved, patients may be encouraged to attend to legal matters and give consent to the types of treatment that they desire. These would form the Advance Directives of the person. An Enduring or Durable Power of Attorney could be prepared in favour of a loved one in the family or some close friend if such procedures are established in the country’s legal system. A formal will could also be executed before it is too late as a result of the patient’s mental incompetence.

In the later stages of Alzheimer’s disease, the patient may not be aware of the consequences of the illness and it would then be a family decision to get him/her assessed and investigated. 

Treatment would mostly be based on the symptoms observed and arrangements have to be made for the long-term care of the individual by way of providing for care-givers, especially if there are none in the family. 

1.    Although I cannot control the disease process, I need to remember I can control many aspects of how it affects my relative.

2.    I need to take care of myself, so that I can continue doing the things that are most important.

3.    I need to simplify my lifestyle so that my time and energy are available for things that are really important at this time.

4.    I need to cultivate the gift of allowing others to help me because caring for my relative is too big a job to be done by one person.

5.    I need to take one day at a time rather than worry about what may or may not happen in the future.

6.    I need to structure my day because a consistent schedule makes life easier for me and my relative.

7.    I need to have a sense of humour because laughter helps to put things in a more positive perspective.

8.    I need to remember that my relative is not being difficult on purpose; rather that his behaviour and emotions are distorted by the illness.

9.    I need to focus on and enjoy what my relative can still do rather than constantly lament over what is gone.

10. I need to increasingly depend upon other relationships for love and support.

11. I need to frequently remind myself that I am doing the best that I can at this very moment.

12. I need to draw upon the Higher Power, which I believe is available to me.

Source: http://my.webmd.com/content/dmk dmk_article_3961786,

10 Warning Signs of Alzheimer’s / Dementia (Memory-Loss) that Disrupt Daily Life

“Memory loss that disrupts daily life is not a typical part of aging. It may be a symptom of Alzheimer’s, a fatal brain disease that causes a slow decline in memory, thinking and reasoning skills. Every individual may experience one or more of these signs in different degrees. If you notice any of them, please see a doctor.”

Ten Warning Signs

• 1. Memory loss that disrupts family life

One of the most common signs of Alzheimer’s is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own.

What’s a typical age-related change? Sometimes forgetting names or appointments, but remembering them later.

• 2. Challenges in planning or problem solving

Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.

What’s a typical age-related change? Making occasional errors when balancing a checkbook.

• 3. difficulty completing familiar tasks at home, at work, or at leisure

People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game.

What’s a typical age-related change? Occasionally needing help to use the settings on a microwave or to record a television show.

• 4. Confusion with time or place

People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.

What’s a typical age-related change? Getting confused about the day of the week but figuring it out later.

• 5. Trouble understanding visual images or spatial relationships

For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror.

What’s a typical age-related change? Vision changes related to cataracts.

• 6. New problems with words in speaking or writing

People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a “watch” a “hand-clock”).

What’s a typical age-related change? Sometimes having trouble finding the right word.

• 7. misplacing things and losing ability to retrace steps

A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time.

What’s a typical age-related change? Misplacing things from time to time, such as a pair of glasses or the remote control.

• 8.  Decreased or poor judgment

People with Alzheimer’s may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.

What’s a typical age-related change? Making a bad decision once in a while.

• 9.  Withdrawal from work or social activities

A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced.

What’s a typical age-related change? Sometimes feeling weary of work, family and social obligations.

• 10. Changes in Mood or Personality

The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.

What’s a typical age-related change? Developing very specific ways of doing things and becoming irritable when a routine is disrupted.

If you have any of these symptoms, you should make an appointment with your family physician , Psychiatrist , Neurologist or local ARDSI group , NGO like Silver Inning Foundation  and let him know of your symptoms. There are medications to delay symptoms of Alzheimer’s if diagnosed early.

Source: http://free-alzheimers-support.com/wordpress/2010/09/10-warning-signs-of-memory-loss-that-disrupt-daily-life/