Dealing with Dementia: Help for relatives, caregivers and friends

-Substitution of Approximate

Phrases (“Where is the thing for

sweeping?” for �broom�)

-Misidentifying People

(Confusing sister with

[deceased] mother)

-Use of “Empty Phrases” (“You

know”, “That thing”)

- Difficulty
  Inhibiting Behavior

-Impulsivity, �Thoughtless�

Comments, Socially Inappropriate

Behaviors

What is the natural course of

dementia?

Depending on the cause of dementia,

the course may vary. In the case of Alzheimer�s disease, the

time between first obvious symptoms, through gradual loss of

cognitive abilities, to death ranges from 7 to 10 years.

Vascular dementia which usually results from the blockage of

small blood vessels in the brain, often has a more erratic

course, at times with stepwise exacerbation that parallels

the destruction of different parts of the brain.

As the dementia progresses, the person

may require increasing care by friends, family members or

institutions

In the past, Harry
had been a very competent driver. Recently, He has

become lost several times while driving, and has had

several accidents because he can�t keep track of

traffic patterns. Despite this Harry becomes irate

when his wife tells him he can�t drive. He demands

to use his car, insisting that it is his right to

drive it.

After washing her
hands, Kathy left the water running in the bathroom

and flooded the house. Lately, she has stopped doing

any cooking since she finds that she can�t remember

how to cook favorite recipes that she has prepared

for years. Last week the police called her daughter

after Kathy became lost while walking to the

neighborhood market.

Unfortunately these problems are often

quite frustrating for the afflicted person and alarming to

her family. The frustrations can lead to her becoming

irritable or demanding, particularly if she doesn�t remember

that she has a problem. She may resent being told that she

can�t do things she has “always” done.

At times dementia can produce a degree

of paranoia, since the affected individual sees those whom

she relies on “taking over” her control. She may attribute

the disappearance of mislaid items to her care provider

stealing her possessions or money.

Despite these changes, people with

moderately severe dementia can often engage in many usual

activities, particularly if they are not expected to

function at a very high level. Readily manageable activities

might include attending a backyard barbecue or picnic;

helping to repot houseplants, drying the dishes or being

taken for a ride in the country.

Many people retain a considerable

degree of social skills. For example laughing at a joke

(often because everyone else is laughing, not because she

understands it). She may carry on a conversation, but

respond in stereotyped and vague ways with empty phrases

(“My, my! Isn�t that something! You know, it�s just like

that.”)

While some rare forms of dementia

don�t progress (e.g. dementia resulting from a head injury),

the course is usually a relentless decline in functioning.

When dementia becomes severe, a person may require much help

with personal care, such as toileting, bathing, dressing and

feeding. Finally the person becomes totally dependent on his

caregivers, loses the use of language and is largely unaware

of his bodily functioning or his environment.

Medical Treatments for Dementia

Depending on the cause of the

dementia, there are different treatments available. For

example if the cause of dementia were severe hypothyroidism,

the treatment would be thyroid hormone replacement.

Until the past few years there was

little that could be done to alter the course of Alzheimer�s

disease. Currently there are a few medications that have

been shown to afford (at most) a modest transient benefit.

The cholinesterase inhibitors (Aricept� (donepezil) and

Cognex� (tacrine) help some individuals. For more

information see our article,

Turning Back the Clock on Dementia

Caring For a Demented Person

Because of the intensity of care that

may be required, it is often difficult for even a loving

family to provide all the “around the clock” care that a

demented relative may need. If friends or family wish to

provide these services it is very important for them to be

aware not only of the demented person�s needs, but also of

their own needs. It is not uncommon for a spouse or children

to feel that they have an impossible choice between being

utterly overwhelmed (if they try to provide all the care) or

feeling they are betraying their relative (if they send them

to a nursing home). This often leads to the care provider

becoming exhausted. Because of this it is often helpful to

investigate local resources to help the care provider (Table

3).

Local

Resources

(Table 3)

Respite
Care

-Publicly or Privately paid

temporary care (relieves primary

care giver to do errands or just

“get away for a while”).

-Friends and relatives often

provide this even when they are

unable or unwilling to share

primary care responsibilities.

- Adult Day
  Care

-Private programs that provide a

safe, structured setting that

helps maintain functioning in

the affected relative (also

respite for the care giver)

- Adult
  Foster Care

-Private individuals or

non-profit organizations

maintain houses and provide care

for one or more impaired persons

(person must generally be able

to perform most self-care

functions).

- Meals on
  Wheels
- Case
  Manager and Service Coordinator

-In recent years a number of

people, often social workers,

assist the families of

cognitively and/or physically

impaired persons with

identifying and coordinating

needed services

Choosing a Nursing Home

There are frequently exceedingly good

reasons why a demented person must move to a nursing home.

Usually this happens later in the illness. Generally it

because his or her care needs or behaviors exceed the

abilities or resources of their family or friends to care

for them at home. This may include the need for skilled

nursing care (e.g. treatment of infected ulcers) or behavior

that requires physical intervention (e.g. agitation or

violent conduct, wandering off, falling).

The decision to move a person into a

nursing home is often wrenching. The demented person may not

wish to go into a nursing home and may become outraged or

frightened when the decision is mentioned. Or he may agree

with the decision when the reasons are explained to him,

only to oppose it later, when he has forgotten the reasons.

There is quite a bit of variation in

the quality of care in nursing homes. It is generally if the

demented person�s friends or family visit the prospective

nursing homes. It is important to ask about the number of

staff members per resident, the qualifications of the staff

(aids, nurses) and the presence and frequency of services by

support personnel (physician, activities

therapist/coordinator, podiatrist). See how other residents

are being treated (Do they appear clean and groomed? Does

the staff seem to be overworked and impatient or pleasant

and respectful toward residents). Talk to family members of

other residents you see there and inquire about their

experiences.

Unfortunately, the cost of living in a

nursing home is quite high. In general, the better staffed

nursing homes cost more, Another consideration is that once

a person uses up their money, they are eligible for Medical

Assistance (Medicaid) to pay for their nursing home

expenses. This requires that if the person has no spouse,

most of their assets must be liquidated and used to pay

nursing home expenses before they can receive Medical

Assistance. This leaves nothing to reimburse relatives who

may have undergone the expense of caring for that person

previously. Even if the resident�s spouse is still alive,

Medicaid qualification will leave only their home (if they

have one) and a limited amount of the commonly owned assets.

Naturally this may alter considerably the financial means of

the non-institutionalized spouse. Some families consider

“sheltering asset” by transferring the demented person�s

property to another family member prior to the move to a

nursing home. The ethics of circumventing the law must be

considered, as well as the legal requirement that this be

done at least 3 years before application for Medical

Assistance.

In the Nursing Home

Once a demented person has moved to a

nursing home, it is not uncommon for her to take several

weeks to get used to the new place. She may become more

confused in the new setting, and may even become more

agitated. Often the care that a resident gets depends on how

the staff views them and their family. It helps to visit

frequently and to get to know the staff. Making frequent

visits (or even phone calls) and asking reasonable,

respectful questions show that the family is concerned about

the welfare of their resident family member. This generally

improves staff treatment of that resident (Some families

find that small presents to the staff help motivate them

toward this end).

Summary

Dementia is a serious illness that

requires much help from a person�s friends, family and

society to manage. The eldest segment of our population is

now the fastest growing group in the United States. As

people live longer, and as the “baby boom” generation ages,

dementia is increasingly likely to affect us directly or

indirectly at some point in our lives. The purpose of this

article is to help provide an introduction to some common

aspects of dementia. While research is progressing to

understand the causes of dementia and to develop more

effective treatments, it remains a significant challenge for

us to deal with.

See our articles on:

Couples and Aging

Anxiety in the Elderly

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