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Caring for a loved one
with Alzheimer’s is one of the biggest commitments one person can
make to another. Alzheimer’s is a disease that can span up to 20
years. For the caregiver, this period will be emotionally, physically
and financially challenging.
Legal and Financial Planning
Legal and financial planning should be one of the first
steps that a caregiver takes once the diagnosis has been made. Persons
with Alzheimer’s may have the capacity to manage their own legal and
financial affairs right now, but as the disease advances, they will
need to rely on others to act in their best interest. This transition
will be difficult, however advance planning allows persons with the
disease and their families to make decisions together for what may
come.
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Legal Matters
Clearly written legal documents that outline your loved one’s
wishes and decisions are essential. These documents can authorize
another person to make health care and financial decisions, including
plans for long-term care coverage. If the person with Alzheimer’s
has the legal capacity — the level of mental functioning necessary
to sign official documents — he or she should actively participate
in legal planning. It is essential that you obtain legal advice and
services from an attorney. If your loved one is 65 years or older,
consider hiring an attorney who practices elder law, a specialized
area of law focusing on issues that typically affect older adults. As
you plan for the future, ask the attorney about the following
documents:
- A power of attorney
gives a person with Alzheimer’s (the principal) an
opportunity to authorize an agent (usually a trusted family member
or friend) to make legal decisions when he or she is no longer
competent.
- A power of attorney for health care
appoints an agent to make all decisions regarding health care,
including choices regarding health care providers, medical
treatment, and, in the later stages of the disease, end-of-life
decisions
- A living will allows
the person with Alzheimer’s disease to express his or her
decision on the use of artificial life support systems.
Living trusts enables a
person (the grantor or trustor) to create a trust and
appoint himself or herself or someone else as trustee (usually an
individual or bank) to carefully invest and manage trust assets once
the grantor is no longer able to manage finances because of
cognitive impairment.
A will is a document
created by an individual that names an executor (the person
who will manage the estate) and beneficiaries (those who
will receive the estate at the time of the person’s death).
A caregiver of an individual who no longer has legal capacity to
execute powers of attorney or trusts may have to become that
individual’s guardian or conservator. A guardian/conservator,
appointed by a court, has the legal authority to make decisions
regarding the care and custody of the person with Alzheimer’s.
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Take a Hard Look at Finances
The first step in planning how to pay for your loved one’s
future medical and living expenses is to start with an honest look at
your family’s current financial situation, as well as that of the
person with Alzheimer’s.
- Assemble the person’s assets by locating such financial
documents as bond certificates, bank account statements, real
estate deeds and insurance policies
- Work with a qualified adviser, such as a financial planner, an
estate planning attorney, or an accountant, to coordinate
financial strategies and investments, locate potential financial
sources, and identify tax deductions
- Identify expenses you may encounter, including ongoing medical
treatments, prescription medicines, care services, and consumable
products, such as incontinence supplies.
The costs for caring for a person with Alzheimer’s are
considerably high, averaging close to $175,000 throughout the span of
the disease. You may be concerned about depleting all of your
resources — and those of your loved ones — to pay for care. To
help offset these costs, you may utilize the many resources available
including:
- Healthcare insurance
Health care
insurance may include private, retiree and government-funded
insurance.
- Medicare
Medicare is a federal health insurance program generally for people
age 65 or older that are receiving Social Security retirement
benefits. Medicare covers inpatient hospital care and a portion of the
doctor’s fees and other medical expenses. There are specific
eligibility requirements in order for a person to receive assistance
from this program. Medicare covers some, but not all, of the services
a person with Alzheimer’s disease may require. Applications for
Medicare may be sent to a local Social Security office.-
Medigap
Medicare coverage can be supplemented with Medigap, a private
insurance that covers co-payments and deductibles required by
Medicare. The more expensive policies may cover prescription drugs.
- Medicare HMO (Medicare Managed Care)
Medicare HMO offers some additional benefits and less paperwork in
exchanged for restrictions on choices of hospitals, doctors, and other
professionals. Most Medicare HMOs cover nursing home and home health
care for limited periods only under special circumstances.
- Medicaid
Because Medicaid is a federal program typically administered by each
state’s welfare agency, eligibility and benefits vary from state to
state. The program is typically administered by a state welfare
agency. Medicaid covers all or a portion of nursing home costs. A
person with Alzheimer’s can qualify for long-term care only if he
has minimal income and cash assets.
- Retirement benefits
Retirement benefits that provide critical financial resources include
retirement plans, individual retirement accounts (IRAs), annuities,
and Social Security.
- Personal savings, investments, and property
Investment assets (stocks and bonds, savings accounts, real estate,
etc.) and personal property (jewelry and artwork) can be sources of
income. Money from the sale of a home can be invested, or a reverse
mortgage can be taken out on a home.
- Tax credits
If you claim your loved one as a dependent under federal tax
regulations, you may be eligible for medical expense deductions and
dependent care credits. -
Social Security disability
This program assists wage earners under 65 who can no longer work
because they are disabled. The applicant must have worked a minimum of
five nonconsecutive years in the past ten years. A diagnosis of
Alzheimer’s does not establish disability status. You must prove
that the person with Alzheimer’s is unable to work by submitting
physician statements and other documentation to your local Social
Security office.
- Supplemental security income
This program guarantees a minimum monthly income to persons who are
age 65 or over, disabled, or blind and have limited income and assets.
To qualify as disabled, persons with Alzheimer’s disease must be
proven to be unemployable. It is important to apply soon after a
diagnosis is made because payments ordinarily begin with the date of
application or eligibility.
For more information on legal and
financial issues, contact the Alzheimer’s Association, Greater
Pennsylvania Chapter Helpline by calling (800) 272-3900 or by clicking
here.
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DAY-TO-DAY CARE
Planning Activities
Daily activities can mean the difference between feeling loved and
needed versus feeling unloved and helpless. When planning activities
and daily tasks to help the person with Alzheimer’s organize their
day, you must think about the skills and abilities the person with
Alzheimer’s has. What does the person enjoy doing?
Does the person begin activities without direction? Does the person
have physical problems?
Each activity should focus on enjoyment, not on achievement.
Determine the best time for the activity and make it a regular part of
the day. Your approach should be supportive – be flexible, patient
and stress involvement. While supervising the activity, help the
person remain as independent as possible, and simplify instructions.
The environment should be safe and have minimal distractions that
could frighten or confuse the person. Whenever possible, change your
surroundings to further encourage activities.
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Hygiene and Personal Care
People with Alzheimer’s disease may need help with grooming and
hygiene. The need for assistance in this area can be very difficult
for them to understand, because it signifies a loss of independence
and privacy. As a caregiver, you may also feel uncomfortable
interfering with one’s privacy.
The following are tips designed to assist the caregiver with
personal care issues:
Bathing
Do everything you can in advance to make the process easier, such
as increasing the room temperature and having bath towels nearby.
Make the person feel in control. Involve and coach him or her
through each step of the process. You may need to experiment to
determine if the individual prefers showers or tub baths and what
time of day is best.
Create a safe and pleasing atmosphere. Place non-slip adhesives on
the floor surface and grab bars in the bathtub to prevent falls.
Test water temperatures in advance to prevent burns.
Respect the person’s dignity. Some individuals may be
self-conscious about their nakedness. Allowing the person to hold a
towel in front of the body, both in and out of the shower, may ease
anxiety.
Don’t worry about the frequency of bathing. Sponge baths can be
effective between showers or baths.
Toileting
It is common for persons with Alzheimer’s disease to experience
loss of bladder and/or bowel control. This can be caused by many
factors, including medications, stress, a physical condition, the
environment, and the person’s clothing. If incontinence is a new
problem, consult your doctor to rule out potential causes such as a
urinary tract infection, weak pelvic muscles, or medications.
Dental Care
Good oral hygiene can be a challenge for individuals with
Alzheimer’s. Brushing is sometimes difficult due to the individual’s
inability to understand and accept assistance from others. To help the
individual, provide short and simple instructions. "Brush your
teeth" may be too difficult. Instead try: "Hold your
toothbrush" or "Put paste on the brush." Use a
mirroring technique by holding a brush and show the individual how to
brush his or her teeth. Finally, monitor daily oral care.
Dressing
Physical appearance
contributes to everyone’s sense of self-esteem. Clothing can be a
form of self-expression, so it’s important to consider the person’s
tastes and dislikes. To help the person with dressing, remember to
simplify choices and choose comfortable clothing. Be flexible and
organized – layout clothing whenever possible.
With all personal care activities, it is important to incorporate
the individual’s past routine whenever possible into the current
one.
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Communicating Effectively
People with Alzheimer’s often find it difficult to express
themselves and understand others. They may have difficulty finding the
right words or experience difficulty organizing words logically. Often
individuals speak less often and rely on non-verbal gestures.
Tips for Enhancing Your Communication:
Maintain eye contact and show that you are listening and trying to
understand what is being said
Encourage the person to continue to express thoughts even if he or
she is having difficulty
Be careful not to interrupt and avoid criticizing, correcting, and
arguing
Be calm and supportive, and use a gentle tone of voice
Use positive, friendly facial expressions
Always approach the person from the front, identify yourself and
address him or her by name
Speak slowly and clearly
Use short, simple, and familiar words
Break tasks and instructions into clear, simple steps
Avoid using pronouns and identify people by their names
Don’t talk about the person as if he or she wasn’t there
Have patience, flexibility and understanding
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Understanding Changing Behaviors
Alzheimer’s can cause a person to exhibit unusual and unpredictable
behaviors, including:
- Severe mood swings
- Verbal or physical aggression
- Paranoia
- Hallucinations
- Anxiety
- Agitation
- Combativeness
- Wandering
- Incontinence
- Sleeplessness
These changes can lead to frustration and tension, particularly
between persons with Alzheimer’s and their caregivers. It is
important to remember that the person is not acting this way on
purpose. Changes in behavior can be caused by:
- Physical discomfort caused by an illness or medications
- Over-stimulation from a loud or overactive environment
- Inability to recognize familiar places, faces, or things
- Difficulty completing simple tasks or activities
- Inability to communicate effectively
Tips for Dealing with Challenging Behaviors:
- Stay calm and be understanding
- Be patient and flexible
- Don’t argue or try to convince the person
- Acknowledge requests and respond to them
- Try not to take behaviors personally
- Accept the behavior as a reality of the disease and try to work
through it
It is important to identify the cause of the challenging behavior
and consider possible solutions:
Identify and examine the behavior
What was the undesirable behavior? Is it harmful to the individual
or others?
What happened before the behavior occurred?
Did something trigger the behavior?
Explore potential solutions
Is there something the person needs or wants?
Can you change the surroundings? Is the area noisy or crowded? Is
the room well lit?
Are you responding in a calm, supportive way?
Try different responses in the future
Did your response help?
Do you need to explore other potential causes and solutions? If
so, what can you do differently?
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Coping with Depression
Depression is a common cause of "reversible" dementia in
older adults. Depression is four times more likely to strike those
over age 65 than younger individuals. It is found in 20 percent of
persons with Alzheimer’s disease, in up to 50 percent of Alzheimer
caregivers, and in 15 percent of adults over age 65. Sadly, most
people never get help for this treatable illness.
Recognizing depression in people with
dementia
Persons with depression may lose interest or pleasure in
activities that were once fulfilling, have difficulty concentrating,
or experience feelings of hopelessness and worthlessness. They may
exhibit such physical symptoms as changes in appetite, weight, energy
and sleeping patterns.
Those with Alzheimer’s disease commonly exhibit symptoms of
depression in the early stages of the disease, while they are still
aware. Because depression and dementia share common symptoms, the two
are sometimes confused, with the result that depression often goes
untreated in persons with Alzheimer’s disease. Alzheimer symptoms,
however, are more progressive than the symptoms of depression and
include profound memory loss. While their depression can be treated
through medications, the cognitive abilities of persons with dementia
will continue to decline.
If symptoms of depression are present, it is important for you to
obtain a complete medical evaluation to rule out any other physical
causes. Medications or an unrecognized disorder may cause depression.
If there are no other underlying causes, consult a psychiatrist or
geriatric psychiatrist, which specializes in recognizing and treating
depression in older adults.
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Safety
When caring for an individual with Alzheimer’s disease at
home, safety and accessibility are important concerns. Here are some
simple steps you can take to make the home safe for the person with
Alzheimer’s:
- Lock or disguise hazardous areas
- Install door locks out of sight
- Use special safety devices, such as child-proof locks and door
knobs, to limit access to places where knives, appliances,
equipment, and cleaning fluids are stored
- Diffuse bright light by removing or covering mirrors and
glass-top furniture, and cover windows with blinds, shades, or
sheer draperies
- Add extra lighting in entries, outside landings, areas between
rooms, stairways, and bathrooms because changes in levels of light
can be disorienting
- Place contrasting colored rugs in front of doors or steps to
help the individual anticipate staircases and room entrances
- Monitor the temperature of water faucets and food because the
person may have a decreased sensitivity to temperature
- Install walk-in showers, grab bars, and decals to slippery
surfaces in the bathroom to prevent falls
- Supervise the person in taking prescription and over-the-counter
medications
- Limit the use of certain appliances and equipment such as
mixers, grills, knives, and lawnmowers
- Supervise smoking and alcohol consumption
- Remove objects, such as magazine racks, coffee tables, and floor
lamps, to create safe wandering areas and reduce the possibility
of injury
- Clean out the refrigerator regularly and discard inedible food
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In the Event of an Emergency
Keep a list of emergency phone numbers and addresses for local
police and fire departments, hospitals and poison control help lines
Check fire extinguishers and smoke alarms, and conduct fire drills
regularly
If the person with Alzheimer’s tends to wander, enroll him or
her in the Safe Return Program,
a nationwide system designed to identify, locate and return to safety
persons who are memory impaired.
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Late-Stage Care
Comfort, dignity, and respect — these are important words for
caregivers to remember in ensuring quality of life during the
late-stage of Alzheimer’s disease. At this point in the disease
process, people typically lose the ability to talk and walk and
experience difficulties with eating. Families and care providers play
a critical role in making tough decisions that ultimately respect the
person’s end-of-life wishes and at the same time maintain the person’s
dignity and comfort.
Advance Directives
People with Alzheimer’s have the legal right to limit or
forgo medical or life-sustaining treatment, including the use of
mechanical ventilators, cardiopulmonary resuscitation, antibiotics and
artificial nutrition and hydration. These wishes can be expressed
through advance directives. Two common forms of advance directives are
a living will and a durable power of attorney for health care.
Family members should not equate the refusal or withdrawal of
treatment, including treatment for life-threatening illnesses
(infections, hemorrhaging, heart attacks, etc.) as euthanasia or
assisted suicide. In fact, aggressive medical treatment may feel like
torture to an individual who is in unfamiliar surroundings and does
not understand the intentions of the care providers.
If there are no advance directives in place, families and care
providers should try to make decisions consistent with what they think
the individual’s wishes would have been. Typically, nursing homes
and hospitals have ethics committees that can facilitate the
decision-making process if there is a conflict between family members
or with the care provider.
Artificial Nutrition and Hydration
People with Alzheimer’s may also refuse to eat and drink. Such
cases should be evaluated to make sure that they are not due to
conditions, such as constipation, kidney failure, nausea and fluid and
electrolyte imbalance, that could be reversed with medications.
Many families and care providers believe that it is appropriate to
do everything in their power to get the person to eat or drink. The
use of feeding tubes and intravenous (IV) hydration is often assumed
to prolong life when in fact it could be lengthening the dying
process. In addition, if these artificial means are used, families
will eventually be faced with the tough decision about whether or not
to withdraw such treatment.
Treating Infections
Pneumonia and urinary tract infections are common in the last
stage of Alzheimer’s. The person’s advance directive should
indicate whether preventive measures such as pneumonia vaccines and
antibiotics might be used. If the Alzheimer patient does not wish to
receive these, care providers can use medications to reduce pain and
make the person more comfortable.
If the patient cannot talk, it is important to look for behavioral
clues such as depressive or psychotic symptoms, anxiety, and sleep and
activity disturbances that may indicate he or she is experiencing
pain.
Restraints
Restraints may be used in long-term care settings and hospitals as
a means to control Alzheimer-related behavior problems such as
wandering, agitation, and combativeness. They are also used to prevent
patients who are receiving artificial nutrition from pulling out the
feeding tube. Although restraints are intended to protect the safety
of the patient, their use can cause harm as well as jeopardize the
individual’s independence and dignity. Physical restraints restrict
the person’s ability to move and, as a result, can cause
incontinence, loss of muscle tone; pressure sores, depression, and
decreased appetite.
People with Alzheimer’s have the right to receive care without
the use of physical or chemical restraints that are not needed to
treat a medical condition. Care providers have an obligation to try
alternatives to restraints, such as diversions for aggressive behavior
or safe places to wander.
Hospice Care
People with Alzheimer’s disease will likely be in and out of
nursing homes and hospitals as the disease advances. One unique care
option is hospice. The underlying philosophy of hospice focuses on
quality and dignity by providing comfort, care and support services
for people with terminal illnesses and their families. Hospice places
an emphasis on maximizing patient comfort and providing counseling and
bereavement services to the family before and after their loved one
dies. To qualify for hospice benefits under Medicare, a physician must
diagnosis the person with Alzheimer’s disease as having less than
six months to live.
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Reach out for Support
It is important for caregivers to
seek support during this difficult stage of the disease. Contact the
Alzheimer’s Association, Greater Pennsylvania Chapter Helpline by
calling (800) 272-3900 or by clicking
here .
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