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Category Archives: caregiving

Guidelines For The Diagnosis And Treatment Of Dementia

People with mild to moderate dementia (and Alzheimer’s) are usually cared for by the family personal care physician and the patient’s family. The personal care physician is often very busy and is not a specialist in the area. The family is often ill equipped to take on this task due to lack of formal training, education, and experience. Family caregivers and the primary caregiver usually take a learn as you go approach. A team of physicians, teachers, and researchers have created a set of guidelines for personal care physicians on how to manage dementia once a diagnosis is made. This article should be read by physicians but I found it very helpful as a caregiver. From the caregiver perspective it will help you understand the services you need and help you interact with your family physician to assure that appropriate actions are being taken and treatments rendered.

Guidelines for the diagnosis and treatment of dementia (PDF)

Canadian Medical Association Journal Press Release

People with mild to moderate dementia are cared for largely by family physicians as well as the patient’s own family, and management of care can be complex and challenging. A team of clinicians, teachers and researchers from the University of Calgary, Dalhousie University, McGill University, Sunnybrook Health Sciences and the University of Toronto, University of Ottawa, University of Western Ontario, Universite de Montreal, University of Saskatchewan and affiliated institutions have created comprehensive guidelines for family physicians on how to manage dementia once a diagnosis has been made. This approach focuses on supporting both the patient and the primary caregiver.

From Diagnosis and treatment of dementia: Approach
to management of mild to moderate dementia

Recommended actions to assist patients with a mild to moderate
dementia and their families after a diagnosis has been made

• Inform the patient and his or her family (if present and appropriate) of the
diagnosis (this would include general counselling and responding to specific
questions)

• Identify the presence of a family caregiver, what support this person can
offer, his or her status (i.e., evidence of strain) and his or her needs (this
would include trying to deal with any identified needs) — ongoing activity

• Decide on the need for referrals for further diagnostic and management
assistance (e.g., referral to genetic clinic for suspected familial cases) —
ongoing activity

• Assess for safety risks (e.g., driving, financial management, medication
management, home safety risks that could arise from cooking or smoking,
potentially dangerous behaviours such as wandering) — ongoing activity

• Determine presence of any advance planning documents (e.g., will, enduring
power of attorney, personal directive). If there are no such documents, advise
that they be drafted. Note that this may include assessing the patientís capacity
to either draft these documents or whether they should be put into effect.

• Assess the patient’s decision-making capacity — ongoing activity

• Refer the patient and family to the local office of the Alzheimer Society of
Canada (www.alzheimer.ca/english/offices/intro.htm [English] or
http://www.alzheimer.ca/french/offices/intro.htm [français])

• Provide information and advice about nonpharmacologic and pharmacologic
treatment options and availability of research studies*

• Develop and implement a treatment plan with defined goals; continually
update plan

• Monitor response to any initiated therapy

• Monitor and manage functional problems (e.g., urinary incontinence) as they
arise

• Assess and manage behavioural and psychological symptoms of dementia as
they arise

• Monitor nutritional status and intervene as needed

• Deal with medical conditions and provide ongoing medical care

• Mobilize community-based and facility-based resources as needed (this
includes being knowledgeable about supportive housing and long-term care
options and the appropriate timing, and process, for facility placement)

David B. Hogan MD, Peter Bailey MD, Sandra Black MD, Anne Carswell MSc PhD, Howard Chertkow MD,Barry Clarke MD, Carole Cohen BA MD, John D. Fisk PhD, Dorothy Forbes RN PhD,Malcolm Man-Son-Hing MSc MD, Krista Lanctôt PhD, Debra Morgan RN PhD, Lilian Thorpe MD PhD

Contact: Dr. Hogan, University of Calgary, 403-220-4578, dhogan@ucalgary.ca

Original content the Alzheimer’s Reading Room.

 

The 36-Hour Day

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This best-selling book is the “bible” for families caring for people with Alzheimer disease. The book is ranked the number one best seller in three categories on Amazon: Alzheimer’s disease, Caregiving, and Eldercare. It carries a five star review from customers.


The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease and Memory Loss in Later Life

In addition to the practical and compassionate guidance that have made The 36-Hour Day invaluable to caregivers, the fourth edition includes new information on medical research and the delivery of care.


This edition includes:

new information on diagnostic evaluation-resources for families and adult children who care for people with dementia-updated legal and financial information-the latest information on nursing homes and other communal living arrangements-new information on research, medications, and the biological causes and effects of dementia.


Tami Greene said…

This book has been the single most helpful tool my family has been given to help us help my mother as she progresses with Alzheimer’s Disease. While other books have touched on many of the topics in this book, no where else have we found as much practical information on how to avoid confrontations with her; ways to improve her daily living; ideas to keep her involved with us and to provide meaning to her life; questions to ask her doctors; types of resources that are available (depending on your area); what to expect as the disease progresses; and how to help each other as we take on the many different roles needed to provide care for her.

I highly recommend this book to others; in fact, I have purchased multiple copies to share with family members and donate to my local library – that’s how helpful and important this book is!

Arthur Jones said…

This is a excellent book and reference for those learning to deal with Alzheimer. Plenty of resources and ideas of what to look for when caring for someone with this disease. You can get a good idea of what to expect and how to help those suffering with this devastating disease. Easy to understand and read. Can’t recommend this book enough.

Amazon.com Widgets

 

The New Old Age Blog

I recently ran across this New York Times blog–The New Old Age.

The blog is dedicated to Baby Boomers and issues they will be facing. You should consider adding this blog to your reader.

I will also be adding it to my Blog Roll (Weblogs) for your convenience. I included the link and the description in the clip below.

About The New Old Age

Thanks to the marvels of medical science, our parents are living longer than ever before. Adults over age 80 are the fastest growing segment of the population, and most will spend years dependent on others for the most basic needs. That burden falls to their baby boomer children, 77 million strong, who are flummoxed by the technicalities of eldercare, turned upside down by the changed architecture of their families, struggling to balance work and caregiving, and depleting their own retirement savings in the process.

Jane Gross on eldercare

In The New Old Age, Jane Gross explores this unprecedented intergenerational challenge and shares the stories of readers, the advice of professionals, and the wisdom gleaned from her own experience caring for her mother in her waning years. You can reach Ms. Gross at newoldage@nytimes.com.

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Alzheimer Disease Behavioral Symptoms Protocols

I found this very informative and valuable handout for caregivers on the Indiana University Center for Aging Research website. The opening webpage is titled Alzheimer Disease Behavioral Symptoms Protocols. On the right hand side of the page you will see a link entitled View Behavioral Symptoms Protocols and this will take you to the handout. If you prefer you can get to the PDF by clicking on this link, Behavioral Symptoms Protocols.

Please pass this information and link on to others. Please consider subscribing to our email or list or added our RSS feed to your reader.

 

Alzheimer’s Caregivers

I recently received my copy of Alzheimer’s Caregivers . This free handbook and tip sheet is well worth obtaining. You can get up to three free copies so its also easy to share. Get your free copy.

If you obtain the handbook, please let me know your reaction. Feel free to email this post to your friends and relatives.


The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease and Memory Loss in Later Life

 

Alzheimer’s Caregivers

I recently received my copy of Alzheimer’s Caregivers . This free handbook and tip sheet is well worth obtaining. You can get up to three free copies so its also easy to share. Get your free copy.

If you obtain the handbook, please let me know your reaction. Feel free to email this post to your friends and relatives.


The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease and Memory Loss in Later Life

 

Health Implications of Family Caregiving

Follow the link for additional information. Sponsored by the National Institute for Health this looks like it could be very informative and of great value to caregivers. This is only a short list of the topics being covered.

clipped from videocast.nih.gov

View event:

You will be able to view the event at http://videocast.nih.gov when the event is live.

Air date:

Wednesday, June 25, 2008, 1:00:00 PM

Caring for a loved one?

Overview of the issue of health and caregivers

Male caregiver’s experience

Powerful Tools for Caregivers

Veterans Affairs efforts to support family caregivers

Sponsors: Centers for Medicare & Medicaid Services and the Department of Health and Human Services New Freedom Initiative Subcommittee on Caregiving

 

Caring, day by day

This is a good example of the kind of service that Caregivers need.

Program filling needs for seniors, caregivers

Her dad needed a day to dress up and socialize. Her mom, meanwhile, just needed a break. So Karen Hutson, a referral specialist for Fairview Commons, started taking her 78-year-old dad to work one day a week.

After the day ends at 4 p.m., Champigny goes home to the care of his wife Norma.

While taking part in Adult Day, which meets from 7:30 a.m. to 4 p.m. every weekday, Champigny gets the benefit of a social circle, Hutson said, and her mother gets a well-deserved rest.

“It’s as good for the caregiver as it is for the (client),” she said.

The “bad part,” according to program director and registered nurse Barbara Cartinelli, is having to convince seniors that participating in Adult Day isn’t the same as moving into a full-time care facility.

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Dementia Factsheet (Alzheimer’s Disease)


I ran across this factsheet from the Milton S Hershey Medical Center. The section entitled,What are the Symptoms, is particularly interesting.


Source Milton S Hershey Medical Center

Dementia

What is it?

Dementia is the gradual deterioration of mental functioning, such as concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities.

Who gets it?

Dementia occurs primarily in people who are over the age of 65, or in those with an injury or disease that affects brain function. While dementia is most commonly seen in the elderly, it is not a normal consequence of the aging process.

What causes it?

Dementia is caused by the death of brain cells. Brain cells can be destroyed by brain diseases, such as Alzheimer’s disease, or strokes (called vascular or multi-infarct dementia), which decrease blood flow to the brain. Lewy body dementia is another common cause attributed to changes in brain tissue. Other causes can include AIDS, high fever, dehydration, hydrocephalus, systemic lupus erythematosus, Lyme disease, long-term drug or alcohol abuse, vitamin deficiencies/poor nutrition, hypothyroidism or hypercalcemia, multiple sclerosis, brain tumor, or diseases such as Pick’s, Parkinson’s, Creutzfeldt-Jakob, or Huntington’s. Dementia can also result from a head injury that causes hemorrhaging in the brain or a reaction to a medication.

What are the symptoms?

In most cases, the symptoms of dementia occur gradually, over a period of years. Symptoms of dementia caused by injury or stroke occur more abruptly. Difficulties often begin with memory, progressing from simple forgetfulness to the inability to remember directions, recent events, and familiar faces and names. Other symptoms include difficulty with spoken communication, personality changes, problems with abstract thinking, poor personal hygiene, trouble sleeping, and poor judgment and decision making. Dementia is extremely frustrating for the patient, especially in the early stages when he or she is aware of the deficiencies it causes. People with dementia are likely to lash out at those around them, either out of frustration or because their difficulty with understanding makes them misinterpret the actions of others. They become extremely confused and anxious when in unfamiliar surroundings or with any change in routine. They may begin a task, such as cooking, then wander away aimlessly and completely forget what they had been doing. Dementia is often accompanied by depression and delirium, which is characterized by an inability to pay attention, fluctuating consciousness, hallucinations, paranoia, and delusions. People in advanced stages of dementia lose all control of bodily functions and are completely dependent upon others.

How is it diagnosed?

Dementia is diagnosed through a study of the patient’s medical history and a complete physical and neurological exam. The doctor will speak with those close to the patient to document a pattern of behavior. He or she will also evaluate the patient’s mental functioning with tests of mental status, such as those that require the patient to recall words, lists of objects, names of objects, and recent events. Diagnostic tests, such as blood tests, x-rays, or magnetic resonance imaging (MRI), positron emission tomography (PET), or computed tomography (CT) scans, can help determine the cause of the dementia.

What is the treatment?

In some instances, treating the cause of dementia may successfully reverse some or all of the symptoms. This is the case when the cause is related to a vitamin/nutritional deficiency, tumor, alcohol or drug abuse, reaction to a medication, or hormonal disorder. When dementia is related to an irreversible destruction of brain tissue, such as with Alzheimer’s disease, Lewy body dementia, or multiple strokes, treatment involves improving the patient’s quality of life as much as possible. This includes maintaining a stable, safe, supportive environment and providing constant supervision. While this may be done in the home, people in the advanced stages of dementia may require round-the-clock care in a long-term healthcare facility. It is important to provide the patient with structured activities and avoid disruptions to his or her daily routine. Many patients enjoy therapeutic activities, such as crafts or games, designed specifically for people with dementia. Some medications, such as donepezil and tacrine, have been effective in improving the mental functions of those in the beginning stages of dementia. Patients with hallucinations and delusions may also be treated with antipsychotic drugs, while antidepressant medications are used to treat depression.

Self-care tips

There is currently no known way to prevent dementia associated with Alzheimer’s disease. You can decrease your risk of dementia associated with stroke by maintaining a healthy lifestyle, following a heart-healthy diet, and controlling high blood pressure and high cholesterol. Healthy lifestyles, including not smoking and not abusing drugs and alcohol, go a long way in keeping most people in good health. Caring for a person with dementia is stressful. It is important to learn all you can about the disease, seek the help of support groups, and find a responsible caregiver who can give you a break when needed. There are daycare programs specifically designed for patients with dementia that are good for the patient and the family.

——————————————————————————–

This information has been designed as a comprehensive and quick reference guide written by our health care reviewers. The health information written by our authors is intended to be a supplement to the care provided by your physician. It is not intended nor implied to be a substitute for professional medical advice.


The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease and Memory Loss in Later Life

 

Reminiscence Therapy and Dementia

clipped from www.cochrane.org

Reminiscence Therapy (RT) involves the discussion of past activities, events and experiences with another person or group of people, usually with the aid of tangible prompts such as photographs, household and other familiar items from the past, music and archive sound recordings. Reminiscence groups typically involve group meetings in which participants are encouraged to talk about past events at least once a week. Life review typically involves individual sessions, in which the person is guided chronologically through life experiences, encouraged to evaluate them, and may produce a life story book. Family care-givers are increasingly involved in reminiscence therapy.

Reminiscence therapy is one of the most popular psychosocial interventions in dementia care, and is highly rated by staff and participants. There is some evidence to suggest it is effective in improving mood in older people without dementia. Its effects on mood, cognition and well-being in dementia are less well understood

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Posted by on March 22, 2008 in alzheimer's, bob demarco, caregiving