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«©2009 AHAA Moments, Inc. 2275 Church Road Aurora, IL 60502 Everything You Always Wanted To Know About Alzheimer’s But Were ...»

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Everything You Always Wanted To Know About

Alzheimer’s But Were Afraid To Ask

Answers to the 101 Most Frequently Asked

Questions About Alzheimer’s Disease

Revised June 25, 2009

©2009 AHAA Moments, Inc.

2275 Church Road

Aurora, IL 60502

www.AlzheimersHope.com

Everything You Always Wanted To Know About

Alzheimer’s But Were Afraid To Ask

Answers to the 101 Most Frequently Asked

Questions About Alzheimer’s Disease

This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold with the understanding that the publisher is NOT engaged in rendering legal, medical, or any other professional service or advice. If medical or legal or other expert assistance is required, the advice of a competent professional should be sought.

From a Declaration of Principles adopted by a Committee of the American Bar Association and a Committee of Publishers Copyright ©2009 AlzheimersHope.com

TABLE OF CONTENTS

Answers to the 101 Most Frequently Asked Questions at The Alzheimer’s Resource Center Introduction

1. Dementia and Alzheimer’s

2. Life expectancy for Alzheimer’s patients

3. Having a loved one evaluated

4. Understanding what a loved one is feeling

5. Wandering

6. Hallucinations/delusions

7. Guilt

8. Why am I feeling so much anger?

9. Is Alzheimer’s hereditary? What are the risk factors?

10. Do I tell my mom she has Alzheimer’s disease? Inform the rest of the family?

11. Can a person with early Alzheimer’s disease lose speech?

12. “Sundowning”

13. What is the best environment for early-stage Alzheimer’s?

14. Down’s Syndrome and Alzheimer’s

15. Pick’s Disease

16. How to deal with agitation

17. Understanding your loved one’s agitation

18. Communication to minimize agitation

19. Non-verbal communication and its relationship to agitation

20. Pain management and agitation

21. Environment and agitation

22. Other advice on agitation

23. Confusion and unsteadiness

24. Are there ever positive personality changes?

25. Do you tell someone with Alzheimer’s that someone close to them has died?

26. Alzheimer’s and cancer treatment

27. Pain and pain treatment

28. Depression

29. Making your home safe

30. If your loved one falls

31. Insomnia

32. Haldol and other medication options 33. “I wish I were dead.”

34. Support for the person with Alzheimer’s

35. Interactions between medicine and alcohol

36. My mom is always looking for her children

37. Thinking the people on TV are real

38. When reading is no longer an option

39. Adjusting to new surroundings after a move

40. When your loved one decides to give up

41. When you can’t get a loved one to shower

42. When you can’t get a loved one to bathe

43. Hiring a caregiver

44. Coping with feelings of grief

45. Keeping your anger under control

46. How to orient a hired caregiver and not upset the routine

47. Activities to do at home with loved one with Alzheimer’s

48. Keeping a journal

49. Art as therapy

50. Can pets have a calming effect?

51. How important is routine?

52. When your loved one becomes verbally abusive

53. When your loved one becomes uncooperative

54. Music and aggressive behavior

55. The blessings of being a caregiver

56. Good and bad days

57. Finding an in-home caregiver

58. Help for the “sandwich generation”

59. What do I tell the grandchildren?

60. How to communicate with your loved one

61. Incontinence

62. When the loved one doesn’t like to be told what to do

63. When the loved one expects to be entertained

64. When other family members are not involved with caregiving

65. Keeping a sense of humor

66. Giving the primary caregiver a break

67. How will I know my loved one can no longer take her medication?

68. Choosing the right adult day center

69. Getting your loved one to attend an adult day center

70. When to start looking at nursing homes

71. When to consider nursing home placement

72. How to choose the right assisted living facility or nursing home

73. Could my loved one be happier in a nursing home?

74. Staying home as long as possible

75. Group homes

76. Dementia care units

77. Aggression and inpatient assessments

78. How to get the nursing home to decrease medication

79. When the person with Alzheimer’s constantly loses or breaks items

80. How to start family council meetings at the nursing home

81. When a nursing home evicts a patient for nonpayment

82. Knowing when to move from adult daycare to a nursing home

83. How often should I visit the nursing home?

84. Wandering from the nursing home

85. Getting your loved one with Alzheimer’s to eat more

86. Aspiration and feeding tubes

87. Family council meetings

88. Speech therapy





89. Medicaid and division of assets

90. When your loved one keeps asking to go home

91. How professional staff and residents’ families can work together

92. Would I benefit from a support group?

93. Advance directives

94. Power of attorney vs. guardianship

95. Durable power of attorney

96. Hospice care: when and how

97. Legal and financial issues

98. How to set up affairs to avoid probate

99. Concerns with driving a car

100. Preventing Alzheimer’s disease

101. Is it naive to hope for a cure?

Introduction

If your loved one has recently been diagnosed with Alzheimer’s disease, you likely have lots of

questions, such as:

–  –  –

This book provides answers to the 101 most frequently asked questions at the Alzheimer’s Resource Center and provides information on how to care for your loved one who has Alzheimer’s.

As you accompany your loved one through the stages of the disease, you’ll find that your role changes. In the early stages, you may have questions about whether your loved one can continue to drive. Or perhaps you are concerned about how to get your or their affairs in order.

As the dementia progresses, you may have questions about caregiving techniques, medical issues, and what the best living arrangement is.

Late stage Alzheimer’s bring new questions as you try to contribute to your loved one’s quality of life, even as that becomes more difficult to do.

In this book, you’ll find answers to your questions about the following issues:

• Symptoms of Alzheimer’s disease; depression and other medical issues

• Caregivers’ emotions and family involvement

• Driving and other safety issues

• Practical tips for activities of daily living

• Advice about adult day centers, in-home care, assisted living facilities, hospice, and nursing homes

• Resources for additional information, assistance, and support groups

• Medicaid and how to cover the cost of your loved one’s care Know that even though life’s challenges may be frustrating and frightening, you are not alone.

Others have taken the journey. Their experience and advice will help you as you deal with caregiving, legal matters, and your own emotions. You may also rediscover your sense of humor and learn to appreciate the loving times and shared experiences with your loved one and other family members.

You did not ask for your loved one to have Alzheimer’s disease, but perhaps you can begin to see the blessings as well as the sadness. As President Ronald Reagan’s son, Ron, said after his father’s death, “My dad may not always have known what was going on, but he could always feel the love.”

1. What is dementia and how is it related to Alzheimer’s disease?

The definition of dementia, according to the American Heritage Dictionary of the English Language, is “deterioration of intellectual faculties, such as memory, concentration, and judgment, resulting from an organic disease or a disorder of the brain. It is sometimes accompanied by emotional disturbance and personality changes.” Dementia is a syndrome or a group of symptoms that causes loss of intellectual function and usually progresses over time.

Alzheimer ’s disease is the leading cause of dementia and the one we hear about the most. Not all people with dementia have Alzheimer’s. Different types of dementia exist. Other conditions, such as depression, will also cause dementia symptoms. Careful diagnosis of any dementia is essential in determining proper treatment and intervention.

Types of irreversible dementia include Parkinson’s Disease (PD), Vascular Dementia (stroke), Pick’s Disease, AIDS, Multiple Sclerosis, Huntington’s Disease, Wilson’s Disease, Lewy Body Dementia, Creutzfeldt-Jakob Disease, Frontotemporal Dementia, and Wernicke-Korsakoff Syndrome (alcohol-related dementia).

Causes of reversible dementia can include depression, drug intoxication, alcohol and other poisons, nutritional deficiencies, brain disorders, diseases, a metabolic condition, organ dysfunction, traumatic brain injury, brain tumor, hydrocephalus, syphilis, encephalitis, and meningitis.

Alzheimer’s is an irreversible dementia condition, but with the appropriate interventions, such irreversible dementias can be managed. Caregivers should seek out education, help, and support.

Physicians’ offices typically have resources available to get you started with this process.

If you would like further information on the different types of dementia, visit the following

websites:

• The Mayo Clinic - www.mayoclinic.com

• The National Institute of Neurological Disorders and Stroke - www.ninds.nih.gov

• The National Alzheimer’s Association - www.alz.org. They have information on “related dementias.”

• Alzheimer’s Disease Education and Referral Center (ADEAR) www.nia.nih.gov/alzheimers

• Web MD - www.webmd.com/alzheimers/guide/alzheimers-dementia

• FamilyDoctor.org - http://familydoctor.org/online/famdocen/home/seniors/mentalhealth/662.html

2. How long can a person live with Alzheimer’s disease?

Each person with Alzheimer’s progresses at a different rate, and not everyone experiences every symptom or stage. Some will plateau at a stage for quite some time, while other will progress very rapidly.

Alzheimer’s disease does not cause death. How ever, the disease progresses to the point that many of the body’s organs begin to shut down. If the patient becomes bedridden, he or she can develop an illness such as pneumonia and be unable to fight it off.

According to several resources, a person with Alzheimer’s can survive from three to twenty years after the first symptoms begin, with an average of eight years.

A great resource for families and caregivers is the book, The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Later Life by Nancy L. Mace and Peter V. Rabins. This book can be purchased at your local bookstore or online.

3. Do I need to have my loved one evaluated? And by whom?

Yes. When the first symptoms of dementia (more-than-mild forgetfulness or confusion) occur, a complete work-up and evaluation by a physician is mandatory. This exam will determine whether symptoms are due to such things as depression, poor nutrition, drug intoxication, alcohol abuse, or organ dysfunction. If your loved one has never been evaluated, a neurologist or geriatrician is your best bet. Those who have been diagnosed with Alzheimer’s should see a geriatric psychiatrist for anxiety, depression, agitation, or any other behavioral issues.

Physician referral services can provide a list of these physicians. Some caregivers receive information and referrals at their support group meetings. It is comforting to see a physician that you know other caregivers have used and liked.

Everyone is different, so if you are not happy with the physician, look for another. Being comfortable with the doctor is important in order for you to ask any questions you need to ask at any time.

Early diagnosis of dementia can indicate treatment to help slow the progression of the disease with appropriate medication. A complete work-up includes: physical examination, medical history, neurological tests, laboratory tests, brain imaging, and function tests.

Once diagnosis is made, inform the primary physician. Your loved one will continue to see a primary care physician for general checkups. The geriatrician, neurologist, or psychiatrist will be seen for issues directly related to dementia.

The best, most effective doctors in this field are also concerned about the health and well-being of the caregiver. Alzheimer’s is a family illness. The doctor needs to be aware of the caregiver’s stress level and be willing to offer support, suggestions, and encouragement to the caregiver. Making sure the caregiver is looked after is the greatest proactive intervention to promoting successful caregiving in the home.

4. How can I better understand what my loved one is feeling/going through?

No one can truly empathize with any situation without having been there themselves. Even then, each person handles life differently. Perhaps the best way to try to understand how your loved one is feeling is to read what several people with Alzheimer’s disease have written and published to educate those who want to know.

These books walk you through their personal journeys. It can be heart-wrenching to read about the devastating things they go through, but it is good for learning and understanding. Reading these books may bring out many of your own emotions, but it may also help you know how your loved one feels.

• Living In The Labyrinth: A Personal Journey Through the Maze of Alzheimer’s by Diana Friel McGowin ©1993, Dell Publishing/ Doubleday Dell Publishing Group

–  –  –



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