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Family Caregiver Guide  




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This segment of the Family Caregiver Guide covers topics discussed in the first of four Family Caregiver training sessions conducted by the Alzheimer’s Association, New York City Chapter in its midtown offices. very family caregiver knows the shockwave that a phone call at 3:00 a.m. can bring.
Understanding Dementia
Let’s get started and tackle the first question, what is dementia?


Dementia is an umbrella term used to describe a group of symptoms which usually includes a serious deficit in memory (created by abnormal changes in the brain) and difficulties in at least one of the following areas:

  • Social functioning (confusion with time and place, which impacts functioning at home, in social situations and in the workplace)
  • Changes in personality (confused, anxious, out of comfort zone, inattentive to appearance)
  • Impaired abstract thinking (challenges in planning or solving problems and completing familiar tasks such as driving or paying bills)
  • Impaired judgment
Is dementia a normal part of aging?

It is a myth that dementia is part of normal aging. It is NOT! Getting older does not mean dementia is a given. There are people 85 years of age and older who are not experiencing any form of dementia. Although it is true that most cases of dementia are diagnosed in people who are 65 years of age and older, some people in their 30s, 40s and 50s are diagnosed with Young Onset Alzheimer’s Disease (which accounts for between 5-10% of cases of AD). As the general population lives longer — the average life span for a male is now 75 years of age, for a female 79.5 — – we are hearing more about Alzheimer’s disease and other dementias.

How do I differentiate between other medical conditions associated with aging and dementia? Why is an early diagnosis necessary?

There is a simple answer: If your family member is experiencing increasing difficulties with their memory, get a comprehensive medical and neurological evaluation and get it early. If you need information about diagnostic centers contact our 24-hour Helpline at 800-272-3900.

When seeking care, identify a physician/ neurologist whom you and your family member trust, who speaks clearly to both you AND the person with the disease. Find a doctor who explains why tests are ordered and what results mean in an easily understandable manner, who is accessible by phone and/or email to answer questions about medications and clinical trials, and is capable of addressing concerns in a sensitive manner.

  • In certain circumstances, symptoms similar to dementia may be attributable to other medical conditions such as endocrine abnormalities (thyroid disease – B12 deficiency); vision or hearing loss (which results in a person feeling more withdrawn or isolated); kidney failure; depression/stress; medications or interactions with multiple medications (may lead to memory loss); and strokes or tumors. Some of these conditions MAY be reversible.
  • An accurate diagnosis is critical in determining the best type of treatment. Certain types of dementia may necessitate different treatment modalities. People diagnosed with dementia live an average of 8-10 years but some people can live up to 20 years with the disease.
  • A diagnosis can detect subtle impairment such as Mild Cognitive Impairment (MCI). MCI is a diagnosis used to describe people who have some problems with their memory but do not actually have dementia. It is a subtle type of memory loss that is not part of the normal aging process. With MCI you will be more forgetful than others in your age group but it will not typically interfere with your ability to participate in daily activities. Visit our Early Stage Services website at www.alznyc.org/earlystageservices.
  • A person with dementia (PWD) and their family need to become educated in order to learn to cope with the disease, plan for the future (take care of legal and financial matters), and figure out how to live life fully in the moment.
What is involved in diagnosing dementia?

  • A battery of neuropsychological tests
  • A comprehensive physical exam
  • Laboratory work
  • Scans of the head (MRI, PET or CT). A PET scan may differentiate between a diagnosis of Alzheimer’s disease and vascular dementia.
  • Electrocardiogram
  • Electroencephalogram
  • Possibly a chest X-ray
What are a person’s chances of being diagnosed with dementia?

Everyone has a lifetime risk of 12%.


How accurate is the diagnosis?

Approximately 90% of diagnoses are reliable, as high as being diagnosed with pneumonia.


Could anything have been done to prevent this?

Doctors strongly urge people to control blood pressure and cholesterol, give up smoking, lose those extra pounds and exercise in order to maximize heart health and minimize risk of strokes, which may result in vascular dementia. If you are diagnosed with diabetes, physicians also recommend keeping it in check.

Research on the importance of diet in reducing the risk of Alzheimer’s disease has received a lot of attention. According to a recent study reported in Archives of Neurology, a diet rich in Omega 3’s, vitamin supplements (E), fruits, nuts, fish, poultry, dark leafy greens, broccoli, and cauliflower may help reduce the risk of Alzheimer’s disease in older people.


What medications are generally prescribed?

The medications most frequently prescribed to treat dementia are Aricept, Exelon, Razadyne, and Namenda. Research has indicated that medications do not work for everyone, but some people taking these medications show some improvement for some period of time. It is important to remember that no disease modifying medications currently exist for Alzheimer’s disease and even if the drugs seem to be helping, the disease continues to progress in the brain.


What is the difference between dementia and Alzheimer’s disease (AD)?

Dementia is an umbrella term for a group of symptoms which affect memory, thinking, behavior, and physical functioning. There are over 75 different types of dementia; Alzheimer’s disease is just one type. If someone suffers from Alzheimer’s disease they suffer from a form of dementia, but if someone has dementia, they may or may not have Alzheimer’s disease. Alzheimer’s is the most common form of dementia, with approximately 60% of all dementia being Alzheimer’s, which may explain why the terms are often used interchangeably.

AD results in abnormalities in the brain, commonly referred to as plaques and tangles. The size of the brain significantly decreases and the plaques and tangles impact different parts of the brain which control speech, memory, learning, problemsolving, spatial navigation, emotions, reaction to sensory stimulation, judgment, and eventually physical functioning.


What are the other types of dementia?

Other types of dementia include:

  • Vascular Dementia – Occurs suddenly after a stroke or a series of miniokes. People diagnosed with vascular dementia will experience periods of deterioration (following the stroke or minioke) and then experience relative stability until the next episode of a stroke.
  • Mixed-Dementia – A combination of AD and vascular dementia.
  • Parkinson’s Related Dementia – Not everyone with Parkinson’s disease is diagnosed with dementia, however, dementia generally occurs in the late stages of the disease.
  • Huntington’s Disease – An inherited degenerative brain disease that affects the mind and body.
  • Frontotemporal Dementia (FTD) – According to www.ftd-picks.org “FTD is a family of neurodegenerative disorders that primarily affect the anterior and temporal regions of the brain. These areas control personality and social behavior, speech, language comprehension, and executive functions involved in reasoning, decision-making and planning. FTD is not like Alzheimer’s disease, although some symptoms may overlap. FTD is characterized by a gradual onset of progressive changes in personality, social behavior and language ability, rather than memory. Because of the symptoms of FTD, it is misdiagnosed as psychiatric problems or Alzheimer’s disease initially.”
  • Lewy Body Disease – Shares commonalities with Alzheimer’s disease as well as Parkinson’s disease. Individuals diagnosed with this type of dementia MAY experience difficulties with movement, delusions and visual hallucinations as well as memory loss.
  • Korsakoff Syndrome – Caused by a lack of Vitamin B1, usually seen in people with alcoholism.
  • Normal Pressure Hydrocephalus– A rare disease caused by fluid build-up in the brain.
  • AIDS Related Dementia
  • Creutzfeldt-Jacob Disease – A rare disease that progresses quickly and sometimes results from mad cow disease.
My family member has been diagnosed, what now?

A flood of emotions occurs. Family members in training sessions often express a gamut of feelings ranging from: “This can’t be true, my family member seems fine most of the time” to “I don’t know what to do, everything is so overwhelming” to “I need to get as much information as possible” to “Should I place my family member in a nursing home?” The personality types of family members and the nature of the relationship with the afflicted person (be it loving, difficult or dependent), coupled with the ambiguity of AD (it is a come and go disease, especially in the earlier stages), result in a unique set of reactions.

Family members as well as the afflicted person often experience feelings of denial, anger, and/or depression. “Our lives have changed, roles in the family have changed.” Adjusting to these changes is very difficult. It is a process which takes time. Sometimes caregivers think they have acclimated, but revert back to established patterns of communication and behavior. Don’t be hard on yourself, accept that this new relationship takes time and you need ongoing support. If your family members are not able or willing to be supportive, contact our 24-hour Helpline to learn about support groups and other resources in your area.

Sometimes caregivers get so wrapped up in the changes in their own lives they can forget what the person with the diagnosis is experiencing. According to Tom Kitwood, author of Dementia Reconsidered: The Person Comes First (1997), the main psychological needs of people with dementia are: love, occupation, a sense of identity, inclusion, comfort, and attachment. Being attentive to the PWD’s psychological needs will positively impact day-to-day interactions.


What can I expect if my family member is diagnosed with
Alzheimer’s disease?


It is important to note that each person diagnosed with Alzheimer’s disease or other forms of dementia is different and may demonstrate different symptoms. It is entirely dependent on how the brain is impacted. It is also important to remember that symptoms progress differently with each person.

EARLIER STAGES — the person with AD will experience at least some of the following:

  • Memory loss
  • Word loss
  • Poor judgment
  • Withdrawal/and or depression
  • Partial disorientation to time
  • Visual/spatial difficulties
  • Mild apraxia (difficulty remembering which object to use for a task, such as a comb)
We often focus on loss, but it is important to build on remaining skills and abilities so the person with dementia doesn’t always feel things are being taken away from them (jobs, daily tasks, responsibilities, etc.). The following skills are preserved:
  • Memory skills (long-ago memories, emotional memories, procedural memories, awareness of familiar vs. unfamiliar)
  • Understanding skills (getting the concrete meaning, picking out familiar or meaningful words, covering well, facial expressions which are consistent with the message being sent)
Other possible issues:
  • Relationship changes
  • Getting loss
  • Unable to remember things (appointments, paying bills, medication management)
  • Driving, safety issues (turning off the stove)
  • Trouble getting dressed, bathing and other activities of daily life
  • Repeating questions
  • Losing things
  • Accusations of stealing
  • The possibility of overeating
MIDDLE STAGES — people with AD will experience at least some of the following:
  • Short-term memory loss with some loss of long-term memory
  • Slowed speech and understanding
  • Complete disorientation to time
  • Restlessness and/or pacing
  • Irritability
  • Urinary incontinence
  • Perseveration (repeating words or phrases over and over again)
  • Personality changes, suspiciousness, hallucinations, delusions
  • Aphasia (difficulty articulating words)
  • Agnosia (less able to interpret sensory input — visual, touch — such as husband or wife’s face)
LATER STAGES — During later stages people with AD generally experience the following (and may require hospice care if demonstrating the last three symptoms listed):
  • Requires assistance to walk, use of a wheelchair
  • Requires a toileting schedule
  • Incoherent speech creating a communications barrier
  • Swallowing problems (forgets how to eat)
  • Weight loss
  • Repeated infections
What services are offered by the Alzheimer’s Association, NYC Chapter?

The New York City Chapter of the Alzheimer’s Association provides a wide range of services, all free of charge. If you would like to learn more about any of the services, call our 24-hour Helpline at
800-272- 3900.
  • Care Consultation: Individual and family care planning, and shortterm counseling.
  • Education Meetings: Understanding Dementia; Legal & Financial Seminar; Medicaid Home Care Seminar; Monthly Education Meeting.
  • Training sessions: Family Caregiver Workshop (10-hour interactive workshop) in English & Spanish; 50-hour Dementia Care Training for Professionals in English & Spanish. Private aides are welcome.
  • Support Groups: More than a 140 to choose from located throughout the city. Nobody understands better than others caring for a family member with dementia.
  • Early Stage Services: Offers MemoryWorks and Connections, programs for people diagnosed with MCI and early stage dementia. The Early Stage Services department also provides counseling and hosts two annual forums.
  • Medic Alert® + Alzheimer’s Association Safe Return Program: A 24- hour nationwide emergency response service for individuals with Alzheimer’s or dementia who wander. Six out of 10 people with dementia will wander or get lost. Save anxiety and stress by enrolling now. The success rate for this program in NYC is one hundred percent.
  • 24 Hour Helpline: Call for information, education, and support. Get answers to your questions, call when you need to talk or vent, to learn more about behavioral issues, day programs, physician referrals, and just about anything else you need or want to know. Available around the clock at 800-272-3900.
— Amy Trommer
Dementia Care Trainer

Next Issue: We will be discussing effective communication techniques which will decrease your anxiety level as well as the person with dementia’s.


Alzheimer's Association

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Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.