The Dartmouth Memory Handbook

Section 7: Living With Dementia


 

Culturally Sensitive Dementia Care

Sumita M. Strander
Dartmouth College Presidential Scholar
Dartmouth College Stamps Leadership Scholar
 
With an increasingly diverse population, the United States is now home to an increasing
number of ethnically diverse individuals living with dementia. As a result, those who work
in the healthcare system have a responsibility to provide culturally sensitive dementia
care. The following paragraphs will provide evidence for the diversification of the
American elderly population, explain how ethnicity affects multiple facets of the
experience of living with dementia, and finally offer recommendations for culturally
competent practices.
 
In 2006, 81% of the American individuals over the age of 65 years were white, 9% were
African-American, 6% were Latino and 3% were Asian American1. By contrast, in 2050,
current estimates predict that only 61% will be white, with 12% African-American, 18%
Latino, and 8% Asian1. Members of every ethnic group are at risk to develop
Alzheimer’s disease and other forms of dementia. In fact, the rate of Alzheimer’s disease
among African-Americans and Latinos is substantially higher than for Caucasian-
Americans1. As the number of individuals with Alzheimer’s disease and other forms of
dementia increases with the aging of the population, the need for culturally competent
dementia care will similarly grow.
 
In order to talk about culturally sensitive dementia care, it is helpful to first define culture.
Culture can be thought of as “shared group behaviors and norms,” which can include
beliefs, values, language, traditions, etc.1. Although culture permeates all forms of
groups and communities, for the purposes of this chapter, only the culture belonging to
particular ethnic groups will be discussed. Additionally, it should be noted that significant
variation within each ethnic group certainly exists, so beliefs and customs shared by
some individuals are not necessarily applicable to all members of the group.
 
An individual’s culture can influence almost every aspect of his or her experience with
dementia, such as the diagnosis and subsequent care processes. Culture also has a
tremendous effect on caregiver experience and burden.
 
Dementia diagnosis relies not only on the physician making the diagnosis but also on the
individual’s ability and likelihood to see a physician in the first place. For many, this is
closely tied with how a particular culture views the signs and symptoms that occur in
dementia, and how willing its members are to seek help from the medical system. Many
ethnic groups tend to view symptoms of the disease as normal parts of the aging
process, and therefore they refrain from seeking help or advice from medical
professionals2. Lower awareness may also be due to a particular ethnic group’s
reluctance to obtain information about the disease through standard public resources.
For example, the New York chapter of the Alzheimer’s Association unsuccessfully
attempted for multiple years to make information on AD available to the Latino
community. Success finally came when they partnered with LAC-NY, the Latino
Alzheimer’s Coalition of New York3. Additionally, studies have determined that certain
ethnic groups do not routinely rely on print media for information, so the type of
information available (not simply the language in which it is written) is also an important
factor2.
 
In terms of the diagnostic process, the 10/66 Dementia Research Group has studied
various means of diagnosing dementia worldwide, but their findings may be less
applicable to minority communities within the United States. They found that differences
in levels of patient education as well as literacy and numeracy) present a substantial
challenge, and often result in inaccurate diagnoses4. Their solution was to utilize a
combination of diagnostic tools: the “community screening instrument for dementia”
(CSI ‘D’), the “geriatric mental state” (GMS/AGECAT) instrument, and the Consortium to
Establish a Registry of Alzheimer’s Disease (CERAD) “ten-word, list learning task” 4.
They found that an algorithm combining all three measures was more reliable and
effective than each measure on its own, irrespective of the ethnic community being
examined4.
 
Once an individual is diagnosed, there are several aspects of the care experience that
are also impacted by the individual’s culture. First, the environment in which the
individual lives is very dependent on a culture’s attitudes towards caregiving. In general,
minority ethnic groups tend to be much more resistant to institutional care for the elderly,
and thus much of the caregiving is delivered by family members1. This may be due to a
close-knit familial network, or to strict hierarchal rules that delegate specific tasks to
certain members of the family. For example, a Nepalese family seeking refuge in the
United States is described in which the adult son (25 years of age) was expected not
only to earn wages for his family but also to be the sole caregiver for his father when he
developed dementia5. The strong sense of a child’s duty to his or her parents is evident
here, and was rightly taken into consideration when the family visited a physician.
 
When these visits do occur, there are many ways in which culture plays a role. First, the
person speaking to the physician and making decisions at appointments varies, and is
not always the person providing the care. Second, the language spoken by the family is
an important consideration, and medical interpreters should be relied upon for
assistance. Even with direct translation, however, certain terms (even ones like
“dementia”) may not have an equivalent in the second language, or may have negative
connotations5. In addition, speaking about the concept of pain can be problematic, as
different cultures have varying norms for the appropriateness of expressing one’s pain or
discomfort5. Third, the family’s goals for care may be different based on each
community. For example, some cultures may prioritize the individual’s place in the
culture’s community as opposed to his or her levels of cognition6.
 
Home visits must also take into account specific norms of the culture. In the same
example of the Nepalese refugee family, when the healthcare team visited the family’s
home, they engaged in several minutes of socialization prior to beginning discussion of
the medical issues at hand5. After the meeting, any instructions or guidelines provided
by the physician or other medical professional will need to be accessible for the family.
Some groups may prefer written notes, while others may prefer audio recordings5.
When an individual of a minority ethnic group comes to require care in a nursing home,
or from a caregiver outside of the family, there are additional cultural considerations to
be made. On one level, organizations such as El Portal (a large partnership of
organizations offering dementia services to Latinos in Los Angeles) are vital for
awareness and access to care3. Once a care plan is in place, it is important that the
caregiver has a deep understanding of the individual’s culture. Some argue that the best
way for this to be done is for nurses of the same minority ethnic group to be hired to
provide this care3. In addition to understanding family roles and cultural customs, these
nurses will also be aware of the importance of spirituality to the individual, and may even
know what music from the individual’s past might be enjoyable for him or her to hear3.
While it may be ideal to have caregivers from the same culture as the person with
dementia, these important cultural considerations can and should be learned by others
who will be providing care to the individual.
 
One final way in which culture affects dementia care is via caregiver burden. Different
cultures have varying expectations of caregivers, and as a result, caregivers experience
their roles differently1. For example, many ethnic minority groups view filial responsibility
as being extremely important, meaning children? Will most likely be expected to provide
the care1. This does not mean, however, that the individual with dementia and the
caregiver will have a close relationship in some cultures; for example, the daughter-inlaw
may be called upon to deliver the care. This does not mean that caregivers will look
positively on this expectation of duty. A study has found that overall, African American
caregivers tend to experience less caregiver burden and depression, whereas Latino
and Asian American caregivers tend to experience more caregiver burden and
depression1. An understanding of the caregiver’s role is an important component of the
entire dementia care process.
 
In conclusion, culturally sensitive dementia care is increasingly required to best serve
the diverse elderly population in the United States. There are many ways in which
culture effects the process of giving or receiving care, beginning with awareness and
diagnosis of dementia, and continuing through the actual administration of care. The
more healthcare professionals and caregivers know about a culture, the more likely
there will be better outcomes. Often, this knowledge can come from the individual and
family itself, and in other cases it may come from organizations or coworkers. In addition
to the incentive of better dementia care provided to a maximum number of elderly,
increased access to care may also lead to increased participation in research3. This, in
turn, will further stimulate future improvements in culturally sensitive dementia care.
 
References
 
1. Napoles, A., Chadiha, L., Eversley, R., & Moreno-John, G: Developing Culturally
Sensitive Dementia Caregiver Interventions: Are We There Yet? American Journal
Of Alzheimer's Disease And Other Dementias, 25(5), 389-406, 2010
 
2. Gray, H., Jimenez, D., Cucciare, M., Tong, H., & Gallagher-Thompson, D: Ethnic
Differences in Beliefs Regarding Alzheimer Disease Among Dementia Family
Caregivers. The American Journal Of Geriatric Psychiatry, 17(11), 925-933, 2009
 
3. Minority Nurse Staff: Culturally Sensitive Dementia Care. Minority Nurse. Retrieved
from http://minoritynurse.com/culturally-sensitive-dementia-care/, 2013
 
4. Prince, M., Acosta, D., Chiu, H., Scazufca, M., & Varghese, M: Dementia diagnosis
in developing countries: a cross-cultural validation study. The Lancet, 361(9361),
909-917, 2003
 
5. Jha B, Seavy J, Young D et al: Positive Mental Health Outcomes in Individuals With
Dementia: The Essential Role of Cultural Competence: The Online Journal Of Issues
In Nursing, 20(1), 2015. (Retrieved from
http://www.medscape.com/viewarticle/847037)
 
6. Gallagher-Thompson, D., Haley, W., Guy, D., Rupert, M., Argüelles, T., & Zeiss, L. et
al: Tailoring Psychological Interventions for Ethnically Diverse Dementia Caregivers.
Clinical Psychology: Science And Practice, 10(4), 423-438, 2006
 

Stigma and Dementia

Robert B. Santulli, M.D.
(Revised September 2016)
 
What is Stigma?
Stigma refers to a set of negative beliefs or attitudes that are felt toward an individual, or
group of individuals by a segment of society, or by society as a whole. The person or
social group that stigmatizes tends to see everyone with a particular characteristic as
“different” and less desirable than others. A variety of subgroups in our society are
stigmatized for a variety of reasons. Among these are people with certain medical
conditions such as mental illness, substance abuse, obesity, and sexually transmitted
diseases. In addition, those with dementia, particularly Alzheimer’s disease, are also
stigmatized.
 
The stigma associated with dementia may be less noticeable than it once was, but it
certainly continues despite important gains in care developed over the last decades and
despite the fact that increasing numbers of prominent figures have publicly discussed
their own illness.
 
The Origins of Dementia Stigma
From childhood, we are taught that to remember well is to be valued. So much of school
learning – particularly for earlier generations – has been based on rote memorization
and the ability to recall. When students remember very well they get good grades on
tests, win the praise of their teachers and parents, go into advanced classes, get into
good colleges and the like. On the other hand, those who don’t remember well do poorly
on exams and are often thought of as “stupid” or “lazy”. Thus, from childhood, poor
remembering (whether due to inherent ability or effort) is viewed negatively, and those
who are poor at remembering, for whatever reason, are considered socially
unacceptable or stigmatized. Later in life, the ability to learn quickly and to remember
remains a valued trait. The salesman who excels at remembering his customers’ names
and personal facts or the employee who is able to learn a new routine quickly and well in
the factory or in the office will advance whereas those who have trouble mastering these
tasks tend to fall behind, or fail.
 
While today’s educational system may be less focused on rote memorization in school,
nevertheless one’s ability to learn and remember well remain highly valued abilities that
are associated with success in many endeavors; and it’s opposite is linked with poor
performance or failure and is highly stigmatized. This value system carries into old age,
and is part of the reason why those who remember poorly - those with Alzheimer’s
disease - often meet with social disapproval or stigmatization. And it is why a common
response of caregivers and others to someone who is beginning to forget is to
encourage them to “try harder” – as if a greater effort, just like in school, will solve the
problem.
 
Other Causes of Dementia Stigma
In the case of Alzheimer’s disease and other dementias, there are other factors, also,
that contribute to the sense of stigmatization, in addition to forgetfulness. As a society,
we place great emphasis on the ability to control one’s public behavior, to appear and
act appropriately in all situations. Unfortunately, people with dementia will almost always
lose this ability sooner or later in the course of the disease. As a result, they may say or
do odd things, appear unkempt or disheveled, speak when or where it is inappropriate,
yell or curse in public, use poor manners at the table, and the like. While none of these
behaviors should be viewed as the “fault” of the person with the disease, nevertheless,
this “loss of control” of one’s behaviors tends to be viewed negatively by others. This is
another important contributor to the stigmatization of those with the disease.
 
Care Partner Stigma
Frequently, the sense of stigma extends as well to the care partner, who may be
“painted with the same brush”. This has been labeled as “stigma by association” or
“courtesy stigma”. However, care partner stigma includes not only the prejudice that the
family caregiver experiences from others regarding the loved one’s dementia, but also
those prejudicial or stigmatic beliefs the family member may hold about the illness.
Of course, not everyone views dementia and those who suffer from it in this devalued
manner. Many, particularly those who have a family member with the condition are very
understanding and sympathetic. However, others may simply be terrified of the illness,
and its victims. Alzheimer’s disease is one of the most feared illnesses among the
elderly. A very common method of dealing with fear is avoidance. Many people with
Alzheimer’s disease or other dementias and sometimes even their care partners are
shunned for this reason. The result for those with dementia, and to some extent for their
family members, is often isolation and stigmatization.
 
The Effects of Being Stigmatized
A number of negative effects can occur as a result of dementia stigma:
 
Delay of Diagnosis:
Studies have shown that when people feel a sense of stigma about Alzheimer’s
disease or other dementias, there can be a significant delay in obtaining a memory
evaluation, and diagnosis, after the onset of symptoms. One of the advantages of
not unduly delaying the diagnostic assessment is that getting a diagnosis allows
individuals and their families to begin to plan for the future, and for the person with
the illness to play an active role in that planning. It also allows for steps to be taken
to insure safety, and to lessen the chance for exploitation of the cognitively impaired
individual. It also is an opportunity to begin to learn as much as possible about the
disease, which is crucial for being able to cope effectively with it. Finally, getting a
diagnosis can lead to the initiation of medication treatment, which may perhaps slow
the rate of progression of the disease.
 
Family Discordance:
The stigma associated with dementia contributes to the sense of discordance
between persons with the disease and their family, because it contributes to the
sense of shame or embarrassment, and the need to conceal or deny symptoms on
the part of the individual with the condition (see p. 183).
 
Decreased Self-Esteem and Depression:
While the person with Alzheimer’s disease or other dementia may not be able to
articulate about feeling stigmatized – a concept, however real, that is nevertheless
too abstract for many who suffer with the disease – individuals with the disease,
especially early in the disease process, are frequently all too aware that aspects of
their functioning and behavior meet with disapproval from those around them. This
contributes to the sense of low self-esteem and depression felt by many who suffer
from the disease.
 
Diminished Interaction with Those who are Cognitively Well:
The stigma that is felt by many toward those with Alzheimer’s disease and other
dementias contributes to the isolation of persons with the illness, and often their care
partners, as well. In turn, this leads to a lessening of quality of life for both. Continued
contact with those who are cognitively well also contributes to positive self-esteem
and better quality of life.
 
Changes in Behavior in the Person with the Illness:
When society expects someone with dementia to behave in a certain way because of
stigma – to be forgetful, childlike, undignified, ill - mannered and so forth – aspects of
these very behaviors can develop because of that social expectation. To some
degree, the behavior of everyone can be molded by societal expectations. Although
people with Alzheimer’s disease and other dementias have difficulty with
remembering and functioning, they are usually aware of the feelings of those around
them, and of the expectations for their own behavior, particularly in the earlier stages
of the disease.
 
Increased Care Partner Burden:
Care partners are also adversely affected by the stigma associated with Alzheimer’s
disease. To the degree the care partner experiences stigma associated with the
disease, the sense of care partner burden increases.
 
Decreasing Stigma
There is no easy solution to the problem of stigma towards those with dementia, and
their families. As with other prejudices, one of the best ways to combat this is through
education of the public about the disease. It is also important (for many reasons) for
persons with dementia and their families to be able to talk openly about the disease, and
for families to form a sense of community with others who share the disease.
Community engagement activities for people with dementia and their families (see pp.
191; 285) offer excellent opportunities to form such a community. It is also very helpful
when persons without cognitive impairment spend time with those who have the
disease.
 

Discordance and Discord:

Disagreements about the Illness

Robert B. Santulli, M.D.
(Modified September 2016)
 
In the majority of people with Alzheimer’s disease, and most other types of dementia, the
individual with the disease is less aware of the illness, its severity and its consequences,
than the primary care partner. While there are certainly exceptions to this pattern, there
is frequently a significant discordance between the person with the disease and the
care partner regarding the presence or extent of cognitive and other difficulties. This
discordance is one of the most distressing and difficult aspects of the care partner’s
attempt to cope with the disease, particularly in the early stages.
 
Causes of Discordance
Several factors contribute to this discordance. One is the use of the defense of denial
by the person with dementia. This is a common defense mechanism used by all
persons, to some degree. Denial is a psychological process that involves the active
rejection from consciousness of a painful or frightening reality. People with Alzheimer’s
disease and other dementias commonly use denial to avoid some of the more
emotionally painful and frightening elements of their condition.
 
A second factor contributing to discordance is the short-term memory impairment
itself, which is, of course, a central feature of most dementias. The person with the
disease is not only motivated to block from conscious awareness those symptoms which
indicate his or her cognitive difficulties (denial), but also, the person often cannot recall
previous events related to his or her cognitive difficulties (short term memory
impairment). As family members will often say, “he forgets that he forgets”.
 
A third factor which leads to discordance between how the care partner and the afflicted
individual views the situation is a phenomenon known as anosognosia. Anosognosia is
a neurological term that refers to the inability to recognize deficits, due to damage in
those areas of the brain that control the capacity to accurately assess one’s abilities and
disabilities. Anosognosia is most commonly associated with damage in the right
hemisphere of the brain. Anosognosia can occur in a variety of neurological and
psychiatric conditions, such as stroke or schizophrenia, in addition to Alzheimer’s
disease and other forms of dementia.
 
In persons with dementia, it can be quite difficult to tell whether the lack of awareness is
psychologically motivated – i.e., due to denial – or is neurologically caused
(anosognosia), or if it has simply been forgotten (recent memory deficit). For example,
the person with dementia who states that he or she has a very good memory when that
is clearly no longer the case may be suffering from denial, or this could represent
anosognosia. It could also be simple forgetting, although that explanation is more likely
when there are specific recent events that are being distorted, not a general inaccurate
assessment of one’s own abilities. In any case, it is good idea for the care partner and
other members of the family to keep anosognosia in mind when the person with the
disease does not recognize his or her deficits.
 
A fourth factor that contributes to the discordance of views is the stigma that is
unfortunately attached to Alzheimer’s disease, and the consequent fear of social
disapproval that is often felt by its victims (see p. 179). Unfortunately, this continues,
despite the important gains in care developed over the last decades, and despite the fact
that increasing numbers of prominent figures have publicly discussed their own struggles
with Alzheimer’s disease and other similar conditions.
 
Whether the problem is due to anosognosia, denial, forgetting, stigma, the fear of social
disapproval, or some combination of all of these, the lack of recognition of deficits is
generally not conscious or volitional on the part of the person with the impairment,
although it can certainly seem like it is. Reminding oneself of the involuntary nature of
this behavior caused by the disease can help lessen the frustration or anger that care
partners may experience otherwise.
 
Reactions to Discordant Views about the Disease
How do care partners and other family members typically respond to the person with
dementia who does not see his or her illness realistically? Some care partners might
argue with the person, insisting that he or she does indeed have a problem and needs to
acknowledge and accept it. However, this approach, while perhaps understandable, is
rarely effective. The person with the disease will likely become more defensive, and
often both parties end up feeling angry. Simply insisting that the person be more
realistic will not reduce denial.
 
On the other hand, the complete avoidance of talking about this discordance creates a
widening gulf between the care partner and the person with the disease. Particularly
when the care partner is a spouse, there probably has never been an issue in their
relationship that has been so fundamentally important - and where opinions are so
fundamentally in disagreement. This disagreement is often greater than any differences
the couple may have had about other basic subjects, such as religion, politics, or sex.
The emotional strain caused by this discordance is a major source of stress and
unhappiness for care partners. Both the care partner and the person with the disease
can understandably become quite upset by the tension and arguing that this discordance
creates.
 
Care partners who avoid any discussion of this discordance usually give several reasons
for this. Understandably, they do not wish to cause conflict with the loved one, and worry
that if they bring up the issue, it will likely lead to defensiveness and arguing, or worse.
In addition, they do not want to raise an issue that they feel will diminish the dignity of
the person with dementia. And they certainly do not wish to cause them distress, as
they realize that living with the disease is already quite challenging and frustrating for the
person with the disease.
 
In addition, some care partners believe that telling the person that he or she has
Alzheimer’s disease, or another form of dementia, will cause harm. The care partner
may fear that the loved one will become so despondent over the news that he or she will
give up trying to function, or will become suicidal. However, studies that have examined
the effect of disclosing the diagnosis have not found any harmful effect from this, even if
it is upsetting initially. While many people with dementia will, from time to time, make a
statement about wanting life to be over, this is generally caused by the awareness of
and frustration over difficulties with remembering and functioning. In general, the more
families talk about the disease, by name, the less likely it is that the person with
dementia will feel the desire to end his or her life. The sense of connection to the family
is probably the strongest factor that protects against suicidal feelings, and being able to
openly discuss what is wrong certainly reinforces that sense of connection. In any case,
it is extremely rare that individuals with dementia actually attempt self-harm. In fact, the
person with dementia often becomes less upset with the diagnosis than their family
members do. This may be because the person with the disease suspects it, or because
they have already lost the ability to be concerned about the full implications of having
such a condition. Nevertheless, families often assume that the news will devastate the
person with the disease, as it has devastated them, but this may not be the case. It is
important to remember that it is the disease that is devastating, and not simply its label.
However, for all of the reasons outlined above, there often exists a “conspiracy of
silence” in which both the person with the disease and the care partner are very aware
that something is wrong, but neither wants to bring it up for fear of upsetting the other.
Applying the label doesn’t make the disease worse or better, of course, but it does now
permit people to talk about it openly. Maintaining a “conspiracy of silence” or faヘade that
nothing is wrong, when in reality the lives of the person with the disease and the care
partner have been fundamentally changed, takes a great deal of energy on the part of
both participants. This is energy that would be better expended dealing openly with the
disease. Facing this “elephant in the room” can certainly be difficult at first, but people
who have broken through the barrier of silence and have begun to speak openly with
their loved ones about the disorder usually feel a great sense of relief, and an enhanced
sense of closeness. Most people find that the overall burdens of the disease are more
manageable when everything is out in the open.
 
Often, however, care partners feel that they do not know how to bring up the subject in a
constructive fashion, or in a way that will not anger, upset or diminish the dignity of the
person with the disease. So they say nothing – at least until some symptom or other
stressful disease-related event makes them angry, and then they may say something
about it in a less than optimal or sympathetic way. Most people with dementia are quite
aware, on some level, that something is wrong; even if they do not want to talk about it,
or even if they do not fully understand the dimensions of the problem or its implications.
For this reason, when a care partner or other family member brings up the subject with
the person who has the disease, one reaction the person with the disease rarely shows
is surprise. Among the most important tasks the care partner must undertake, then, is to
find a way to create opportunities to talk openly and dispassionately about the illness, so
that this critical issue in their lives is not artificially kept out of open communication.
These discussions are probably the most uncomfortable (and therefore least likely to
occur) in marital relationships that are difficult and conflict-ridden, in the first place.
Similarly, when the care partner is an adult child, talking about the illness openly is
generally the most difficult when the parent – child relationship is one characterized by
either idealization of the parent or when the adult child feels intimidated by, fearful of, or
chronically angry at the parent with the disease. But these relationships – already
conflicted in the first place – will only grow more distant if the subject continues to be
avoided, and this puts increasing strain on an already-stressed relationship.
 
Lessening Discordance
Denial and the other factors contributing to discordance cannot be forcefully or suddenly
eliminated by any action of the individual, a care partner or anyone else. To a great
degree, the awareness and acceptance of the illness in the person with dementia will
occur at its own pace. Indeed, there are some couples or families where the word
“Alzheimer’s” or “dementia” is never spoken, despite years of symptoms. In these
families, there may be no discussion at all of cognitive difficulties, although continuing
that subterfuge as the disease progresses becomes increasingly difficult and stressful.
While this approach is certainly not optimal, the dynamics of some families are such that
avoidance may seem to be the only way the matter can be handled. Before reaching
that conclusion, however, it would be useful for the care partner to consider if avoidance
is truly necessary for the benefit of the person with the illness, or if it is, in fact, the care
partner himself or herself that does not wish to face the issue.
 
There are a number of approaches to dealing with this discordance. Very often, these
approaches can help the person with dementia become more realistic about his or her
illness and can make room for more open discussion of the situation sooner rather than
later. First, it is important to realize that it is exceptionally difficult, if not impossible, to
reduce denial in the person with the disease as long as either the primary care partner or
other members of the family are also in significant denial about it.
 
In addition, it is important for the family to present a unified opinion when discussing
difficult issues such as these. If there is debate and lack of consensus about a particular
issue among family members, it is best for everyone, particularly for the person with
dementia, to have this settled before the issue is raised with the person with the disease.
Care partners or other family members often need to be convinced of the importance of
discussing the disease openly with their loved one, and they need to feel confident that
doing so will not harm the person with the disease, even if it is initially quite difficult and
upsetting. Eventually, many care partners will reach this conclusion on their own, or with
the help of a confidante, or perhaps through attending a support group. Once the care
partner recognizes the importance of talking to the loved one openly about the disease,
he or she will usually be able to find ways to discuss the illness-related concerns with the
afflicted person. Nevertheless, there are several principles that bear mentioning:
 
First, it is important to bring the subject up regularly, taking into account the fact that the
person with dementia is likely to forget some or all of the conversations. There can be a
fine line between being repetitive about an important topic, and badgering the person
with the disease; certainly one wants to avoid the latter. Generally, it is best to bring it
up when examples of forgetfulness or other cognitive symptoms have occurred, rather
than at other times, but being careful to avoid anger and an attitude of “I told you so”.
Some care partners may feel that it is better to talk about the disease when everything is
going “smoothly”. While that reasoning is understandable, and may work well for some,
discussing the problems at such a time may, in fact, not be very successful. If episodes
of forgetting or other symptoms have not just occurred, the person with the disease may
simply not remember any of the problems they have had, and honestly cannot relate to
the concerns the care partner is raising. Whatever the best time for discussing this
might be for a particular individual, the important concept is that living with the illness
should become an open and permitted topic of regular conversation, not something that
is only talked about in times of crisis and avoided at other times.
 
Who should be involved in these discussions will differ in each family. Some will want to
restrict this discussion to only the immediate family members, or only between husband
and wife. Other families are comfortable sharing this with a wider group. It is also
important to consider whether the desire to keep the disease hidden is coming from the
person with the illness, or from the care partner. Much of the reluctance to discuss this
may be due to the stigma surrounding the illness, which only adds to the burden felt by
people with dementia and their care partners.
 
It goes without saying that the illness must be discussed in a non-judgmental fashion.
Dementia is not the fault of the person with the disease, and it is important for the care
partner and other family members to work very hard to keep the afflicted individual from
feeling blamed for his or her problems. Symptoms do not, of course, represent a
personal shortcoming or moral failure, and therefore the family’s talking about the illness
should not be viewed as insulting to the person with the disease, although it often is
viewed that way by those who are quite defensive in the first place.
 
The third principle that will facilitate a productive discussion about the illness is that
whenever one brings up the symptoms, it is important to counterbalance this with a
comment about the person’s preserved abilities or characteristics that remain intact.
Most individuals with dementia experience the illness as a significant assault on their
self-esteem, even if few are able to talk about that concept spontaneously, or openly.
Too often, there is an excessive focus on what is going wrong, rather than on the
considerable amount of the self that remains intact, even in the later stages of the
disease. It is incumbent upon the care partner to take stock of the individual’s preserved
capabilities and traits, so that these can be emphasized to the individual in a way that is
genuine, and not patronizing. Doing so can help maintain the self-esteem of the person
with dementia. It can also facilitate the lessening of denial so that the illness can be
discussed more openly.
 

Dos and Don’ts for Effective Communication

Robert B. Santulli, M.D.
(Revised September, 2016)
 
Below are some suggestions for attitudes to adopt, techniques to use, and things to
avoid when interacting with someone with Alzheimer’s disease or other type of
dementia.
 

DO:

 
1. Do have patience.
Communicating with someone with dementia, and being certain that the individual
understands the communication, usually takes much longer than communicating with
people who do not have dementia. Do not try to rush it.
 
2. Do make all communications short, simple and clear
Give only one direction, one question, or one idea at a time.
 
3. Do remind the person who you are unless you are certain they know
 
4. Do call the person by name
 
5. Do speak slowly
The person with dementia may take longer to accurately process and understand what
is being said.
 
6. Do use closed-ended questions that can be answered “Yes” or “No”
For example, ask: “Did you enjoy the roast beef at dinner?” rather than:
“What did you have for dinner?”
 
7. Do find a different way to say the same thing if it wasn’t understood the first
time(s)
Usually, a simpler, more concrete statement, with fewer words will be better understood.
 
8. Do use distraction, partial truths, or even “fiblets” when necessary, if telling
the whole truth will upset the person with dementia
For example, in answer to the question, “Where is my mother?” sometimes it might be
better to say: “She’s not here right now” rather than “She died twenty years ago”.
 
9. Do use repetition as much as necessary
Be prepared to say the same things over and over because the person with dementia
can’t recall them for more than a few minutes at a time.
 
10. Do use techniques to attract and maintain the person’s attention
Smile; make eye contact; use gestures and touch
 

DON’T:

 
1. Don’t ever say:
“Do you remember?”
“Try to remember!”
“Did you forget…?”
“How could you not know that?
 
2. Don’t ask questions that directly challenge short-term memory.
Don’t say, “Do you remember what we did last night?” The answer will likely be “no”,
and this may be humiliating for the person with dementia.
 
3. Don’t talk in paragraphs.
Persons with dementia may be unable to follow a complex set of ideas presented. Offer
one idea at a time. One noun and one verb in one sentence is enough for the person
with dementia.
 
4. Don’t say anything that points out the person’s memory difficulty
Avoid remarks like: “I just told you that” or “We already talked about that” – just repeat it
again (and again).
 
5. Don’t talk in front of the person as if he or she were not present
Always include the person with dementia in any conversation when they are physically
present, even if it seems unlikely that they are able to follow what is being said
 
6. Don’t use vague language when it is possible to be more specific
For example, “Why don’t you sit in the blue chair” rather than “Why don’t you sit over
there”; or “I enjoyed going out to dinner and to that movie” rather than “That was an
enjoyable evening”.
 
7. Don’t use slang, unfamiliar words, or jargon
The person with dementia may not understand the latest expressions in common
parlance.
 
8. Don’t use patronizing language or “baby talk”
Even very demented persons are sensitive to being “talked down” to or patronized, and
will feel offended, angry or hurt.
 
9. Don’t use sarcasm, irony; be cautious with humor
This kind of humor may be well intentioned but can easily backfire and cause hurt or
confusion.
 
10. Don’t forget that body language and emotional tone may be well understood,
even if the actual words are not
People with dementia usually remain quite aware of and sensitive to the feelings
expressed in speech even when the content is less clear
 

Engagement Activities For Persons

with Dementia and their Care Partners


Robert B. Santulli, MD
(Added September 2016)
 

 
Introduction
Too often, people with Alzheimer’s disease and other dementias gradually withdraw from
their environment and can easily sink into a state of extreme passivity, if not depression.
In part, this is due to the development of apathy, which is a very common symptom of
Alzheimer’s disease and other dementias. Another contributing factor is that those
activities that individuals used to enjoy may be more challenging now, and ultimately
frustrating for the person whose short-term memory and ability to accomplish tasks
independently is diminishing.
 
The Value of Engaging in Activities
When someone who suffers from a cognitive disorder stays engaged in activities that are
meaningful and enjoyable, which can be mastered without frustration, and which foster
contact with others and with the community, the individual’s mood and overall quality of
life are enhanced. While engaging in enjoyable activities won’t prevent the progression
of dementia, it will help to maximize and preserve those abilities that remain, and provide
pleasure in the moment, something that is too often lacking for those with progressive
cognitive decline.
 
Benefits for the Care Partner
In addition to the value of participating in activities for the person with dementia, when
participation is shared with the care partner, the care partner benefits greatly, as well.
Care partners have a tendency to become isolated, just as people with the disease do;
they need to stay connected to their world just as much as the person with dementia.
When activities are carefully chosen, they can serve as very welcome opportunities for
the person with cognitive problems and his or her care partner to enjoying doing
something together. This togetherness has usually been an important element of a
successful relationship over the years, but too often it becomes something that is
increasingly difficult to maintain as the disease progresses.
 
What Type of Activities Are Best?
Any activity is fine. The requirements are simply that it is enjoyable, and something the
individual can master, but not be infantilizing. Many people with dementia are drawn to
activities they have previously enjoyed, but some become involved in, and enthusiastic
about, entirely new activities.
 
Clearly, activities that require a great deal of new learning (e.g., learning new card
games, board games, or dance steps) are less likely to be successful than activities that
rely on “procedural memory”, such as, for example, catching a beach ball, or taking a
walk. Activities that call upon preserved abilities (such as listening to music, singing old
songs, enjoying nature or simple gardening, for example) are often successful and
greatly enjoyed.
 
Group Activities
As described above, activities that can be pursued by both the person with dementia and
his or her primary care partner, such as going for leisurely walks together, are vitally
important and should happen regularly. However, there is also great value in pursuing
activities in groups, with other “dementia couples” (typically, a husband and wife, or an
adult child and parent in which one spouse, or the parent, suffers from a cognitive
disorder). Such group activities for dementia couples tend to be geared to a level that
persons with the disorder can manage. Individuals who have cognitive problems can
enjoy the camaraderie that often develops among those with similar issues. They are
freed from feeling that they have to struggle to “keep up” or to conceal the fact of their
difficulties, as is so often the case in social settings with those who do not have
dementia.
 
In addition, care partners benefit from the opportunity to interact with and get to know
other care partners, to form a network among those who understand the situation best,
because they are living with it themselves. Similar bonding can occur in support groups,
also – indeed, that is one of the important benefits of attending a support group for care
partners. But group activities that include the person with dementia offer a different and
very valuable experience for the care partner. Witnessing other care partners relate to
their loved one can be most enlightening, and many care partners learn techniques for
managing issues which occur, or simply benefit from observing different styles of
interacting with someone with cognitive difficulties. In addition, it can be quite helpful for
care partners to get to know other people with dementia, an experience they might not
otherwise have. Observing the similarities, as well as the differences, between different
people with dementia, including those at different stages of the disease, can be a most
useful lesson.
 
See p. 285 for a description of engagement activities available in the Upper Valley.
 

Managing Day-to-Day Activities

 
From the National Institute on Aging
Alzheimer’s Disease Education and Referral Center
https://www.nia.nih.gov/alzheimers/publication/
caring-person-alzheimers-disease/about-guide
 
Caring for a person with Alzheimer's disease (AD) at home is a difficult task and can
become overwhelming at times. Dressing, bathing, eating--basic activities of daily living-
-often become difficult to manage for both the person with AD and the caregiver. Having
a plan for getting through the day can help caregivers cope. Many caregivers have found
it helpful to use strategies for dealing with difficult behaviors and stressful situations.
Following are some suggestions to consider when faced with difficult aspects of caring
for a person with AD.
 
Activities
• What to do all day? Finding activities that the person with AD can do and is
interested in can be a challenge. Building on current skills generally works better
than trying to teach something new.
 
• Don't expect too much. Simple activities often are best, especially when they use
current abilities.
 
• Help the person get started on an activity. Break the activity down into small
steps and praise the person for each step he or she completes.
 
• Watch for signs of agitation or frustration with an activity. Gently help or distract
the person to something else.
 
• Incorporate activities the person seems to enjoy into your daily routine and try to
do them at a similar time each day.
 
• Take advantage of adult day services, which provide various activities for the
person with AD, as well as an opportunity for caregivers to gain temporary relief
from tasks associated with caregiving. Transportation and meals often are
provided.
 
Bathing
• While some people with AD don't mind bathing, for others it is a frightening,
confusing experience. Advance planning can help make bath time better for both
of you.
 
• Plan the bath or shower for the time of day when the person is most calm and
agreeable. Be consistent. Try to develop a routine.
 
• Respect the fact that bathing is scary and uncomfortable for some people with
AD. Be gentle and respectful. Be patient and calm.
 
• Tell the person what you are going to do, step by step, and allow him or her to do
as much as possible.
 
• Prepare in advance. Make sure you have everything you need ready and in the
bathroom before beginning. Draw the bath ahead of time.
 
• Be sensitive to the temperature. Warm up the room beforehand if necessary and
keep extra towels and a robe nearby. Test the water temperature before
beginning the bath or shower.
 
• Minimize safety risks by using a handheld showerhead, shower bench, grab
bars, and nonskid bath mats. Never leave the person alone in the bath or
shower.
 
• Try a sponge bath. Bathing may not be necessary every day. A sponge bath can
be effective between showers or baths.
 
Dressing
• For someone who has AD, getting dressed presents a series of challenges:
choosing what to wear, getting some clothes off and other clothes on, and
struggling with buttons and zippers. Minimizing the challenges may make a
difference.
 
• Try to have the person get dressed at the same time each day so he or she will
come to expect it as part of the daily routine.
 
• Encourage the person to dress him or herself to whatever degree possible.
Plan to allow extra time so there is no pressure or rush.
 
• Allow the person to choose from a limited selection of outfits. If he or she has a
favorite outfit, consider buying several identical sets.
 
• Arrange the clothes in the order they are to be put on to help the person move
through the process.
 
• Provide clear, step-by-step instructions if the person needs prompting.
 
• Choose clothing that is comfortable, easy to get on and off, and easy to care for.
Elastic waists and Velcro enclosures minimize struggles with buttons and
zippers.
 
Eating
• Eating can be a challenge. Some people with AD want to eat all the time, while
others have to be encouraged to maintain a good diet.
 
• Ensure a quiet, calm atmosphere for eating. Limiting noise and other distractions
may help the person focus on the meal.
 
• Provide a limited number of choices of food and serve small portions. You may
want to offer several small meals throughout the day in place of three larger
ones.
 
• Use straws or cups with lids to make drinking easier.
 
• Substitute finger foods if the person struggles with utensils. Using a bowl instead
of a plate also may help.
 
• Have healthy snacks on hand. To encourage eating, keep the snacks where they
can be seen.
 
• Visit the dentist regularly to keep mouth and teeth healthy.
 
Exercise
• Incorporating exercise into the daily routine has benefits for both the person with
AD and the caregiver. Not only can it improve health, but it also can provide a
meaningful activity for both of you to share.
 
• Think about what kind of physical activities you both enjoy, perhaps walking,
swimming, tennis, dancing, or gardening. Determine the time of day and place
where this type of activity would work best.
 
• Be realistic in your expectations. Build slowly, perhaps just starting with a short
walk around the yard, for example, before progressing to a walk around the
block.
 
• Be aware of any discomfort or signs of overexertion. Talk to the person's doctor if
this happens.
 
• Allow as much independence as possible, even if it means a less-than-perfect
garden or a scoreless tennis match.
 
• See what kinds of exercise programs are available in your area. Senior centers
may have group programs for people who enjoy exercising with others. Local
malls often have walking clubs and provide a place to exercise when the weather
is bad.
 
• Encourage physical activities. Spend time outside when the weather permits.
Exercise often helps everyone sleep better.
 
Incontinence
• As the disease progresses, many people with AD begin to experience
incontinence, or the inability to control their bladder and/or bowels. Incontinence
can be upsetting to the person and difficult for the caregiver. Sometimes
incontinence is due to physical illness, so be sure to discuss it with the person's
doctor.
 
• Have a routine for taking the person to the bathroom and stick to it as closely as
possible. For example, take the person to the bathroom every 3 hours or so
during the day. Don't wait for the person to ask.
 
• Watch for signs that the person may have to go to the bathroom, such as
restlessness or pulling at clothes. Respond quickly.
 
• Be understanding when accidents occur. Stay calm and reassure the person if he
or she is upset. Try to keep track of when accidents happen to help plan ways to
help prevent nighttime accidents, limit certain types of fluids--such as those
with caffeine--in the evening.
 
• If you are going to be out with the person, plan ahead. Know where restrooms
are located, and have the person wear simple, easy-to-remove clothing. Take an
extra set of clothing along in case of an accident.
 
Sleep Problems
• For the exhausted caregiver, sleep can't come too soon. For many people with
AD, however, nighttime may be a difficult time. Getting the person to go to bed
and stay there may require some advance planning.
 
• Set a quiet, peaceful tone in the evening to encourage sleep. Keep the lights dim,
eliminate loud noises, even play soothing music if the person seems to enjoy it.
 
• Try to keep bedtime at a similar time each evening. Developing a bedtime routine
may help.
 
• Encourage exercise during the day and limit daytime napping.
 
• Restrict access to caffeine late in the day.
 
• Use night lights in the bedroom, hall, and bathroom if the darkness is frightening
or disorienting.
 
Home Safety
• Caregivers of people with AD often have to look at their homes through new eyes
to identify and correct safety risks. Creating a safe environment can prevent
many stressful and dangerous situations.
 
• Install secure locks on all outside windows and doors, especially if the person is
prone to wandering. Remove the locks on bathroom doors to prevent the person
from accidentally locking him or herself in.
 
• Use childproof latches on kitchen cabinets and any place where cleaning
supplies or other chemicals are kept.
 
• Label medications and keep them locked up. Also make sure knives, lighters and
matches, and guns are secured and out of reach.
 
• Keep the house free from clutter. Remove scatter rugs and anything else that
might contribute to a fall. Make sure lighting is good both inside and out.
 
• Consider installing an automatic shut-off switch on the stove to prevent burns or
fire.
 
Driving
(See also p. 211)
• Making the decision that a person with AD is no longer safe to drive is difficult,
and it needs to be communicated carefully and sensitively. Even though the
person may be upset by the loss of independence, safety must be the priority.
 
• Look for clues that safe driving is no longer possible, including getting lost in
familiar places, driving too fast or too slow, disregarding traffic signs, or getting
angry or confused.
 
• Be sensitive to the person's feelings about losing the ability to drive, but be firm in
your request that he or she no longer do so. Be consistent--don't allow the
person to drive on "good days" but forbid it on "bad days."
 
• Ask the doctor to help. The person may view the doctor as an "authority" and be
willing to stop driving. The doctor also can contact the Department of Motor
Vehicles and request that the person be reevaluated.
 
• If necessary, take the car keys. If just having keys is important to the person,
substitute a different set of keys.
 
• If all else fails, disable the car or move it to a location where the person cannot
see it or gain access to it.
 
Visiting the Doctor
(See also p. 163)
• It is important that the person with AD receive regular medical care. Advance
planning can help the trip to the doctor's office go more smoothly.
 
• Try to schedule the appointment for the person's best time of day. Also, ask the
office staff what time of day the office is least crowded.
 
• Let the office staff know in advance that this person is confused. If there is
something they might be able to do to make the visit go more smoothly, ask.
 
• Don't tell the person about the appointment until the day of the visit or even
shortly before it is time to go. Be positive and matter-of-fact.
 
• Bring along something for the person to eat and drink and any activity that he or
she may enjoy.
 
• Have a friend or another family member go with you on the trip, so that one of
you can be with the person while the other speaks with the doctor.
 
Coping with Holidays
• Holidays are bittersweet for many AD caregivers. The happy memories of the
past contrast with the difficulties of the present, and extra demands on time and
energy can seem overwhelming. Finding a balance between rest and activity can
help.
 
• Keep or adapt family traditions that are important to you. Include the person with
AD as much as possible.
 
• Recognize that things will be different, and have realistic expectations about what
you can do.
 
• Encourage friends and family to visit. Limit the number of visitors at one time,
and try to schedule visits during the time of day when the person is at his or her
best.
 
• Avoid crowds, changes in routine, and strange surroundings that may cause
confusion or agitation.
 
• Do your best to enjoy yourself. Try to find time for the holiday things you like to
do, even if it means asking a friend or family member to spend time with the
person while you are out.
 
Visiting a Person with AD
• Visitors are important to people with AD. They may not always remember who
the visitors are, but just the human connection has value. Here are some ideas to
share with someone who is planning to visit a person with AD.
 
• Plan the visit at the time of the day when the person is at his or her best.
Consider bringing along some kind of activity, such as something familiar to read
or photo albums to look at, but be prepared to skip it if necessary.
 
• Be calm and quiet. Avoid using a loud tone of voice or talking to the person as if
he or she were a child. Respect the person's personal space and don't get too
close.
 
• Try to establish eye contact and call the person by name to get his or her
attention. Remind the person who you are if he or she doesn't seem to recognize
you.
 
• If the person is confused, don't argue. Respond to the feelings you hear being
communicated, and distract the person to a different topic if necessary.
 
• If the person doesn't recognize you, is unkind, or responds angrily, remember not
to take it personally. He or she is reacting out of confusion.
 
The National Institute on Aging gratefully acknowledges the following
Alzheimer's Disease Centers for their valuable contributions of information:
Duke University Joseph and Kathleen Bryan
Alzheimer's Disease Research Center
The Johns Hopkins University Alzheimer's Disease Center
 

Sexuality and Dementia

Heba Gad, MD
(Added September, 2016)
 
Human sexuality is a basic need; it is often associated with procreation and youth in
many cultures and belief systems. This association perpetuates the myth that older
people do not have sex as much as younger people. However, studies have shown that
sexually active older men and women are as satisfied, if not more satisfied, than when
they were in their forties when it comes to intimacy. Sexual expression between two
individuals is a complex process; it extends beyond meeting a biological need. It
involves complex psychological, physical, emotional, spiritual and social factors. Sexual
partners develop their own individual meaning to what it means to be intimate with one
another.
 
When dementia develops, it can disrupt those established connections between
partners. This disruption may be related to cognitive deterioration, impaired judgment or
personality changes that affect the person with dementia, which can make them look like
a different person to their long-term partner.
 
There is no way to predict how a person’s sexuality will change in the setting of
dementia, or if it will change at all. Some couples maintain their intimacy with the same
partner until the very last stages of the illness. It may take different forms from what
they were used to. A couple may be content with kissing, cuddling, hand rubs or
massages, which may meet the need for closeness.
 
Decrease in sexual interest is the most common pattern of sexual interest change in a
person with dementia, which may not be problematic if it matches that of their partner.
However, conflict may arise if the affected person’s sexual interest mismatches the
partner’s interest.
 
The caregiving partner’s interest commonly declines, especially in women caregivers, for
the following reasons:
 
• Change in the dynamics between the partners from a couple to a patient -
caregiver. This leads to “infantilization” of the person with dementia; the caregiver
channels their energy and interest into the caregiving role. The caregiver may
become more of a maternal/paternal figure rather than an equal partner
 
• Stress and burnout related to caregiving responsibilities may negatively impact
the caregiving partner’s physical and sexual ability to be interested in sex
 
• Grief and other emotional difficulties the caregiver may experience watching their
partner’s cognition and functioning slowly fade away
 
• The fear/worry that the simple show of affection can be perceived by the person
with dementia as a pursuit of sexual intimacy; the caregiving partner may shy
away from any form of touch as a result.
 
• The caregiver’s concern that their partner with dementia may not have the
capacity to consent to the sexual act and can be viewed as rape.
 
Sexuality in the later stages may become somewhat tricky when the person with
dementia stops recognizing their partner and issues of consent come into question. A
trickier situation can happen when the person with dementia is placed and they start
showing sexual interest in another resident, which can be quite traumatic to the
caregiving partner. There is a wide variation among nursing homes regarding the levels
of sexual activity and privacy permitted for their residents with dementia.
 
Some types of dementia, specifically frontotemporal dementia, present with behavioral
changes more than memory changes. Due to the frontal lobe atrophy, where judgment
and self-control lie, a person with this type of dementia may become sexually
impulsive/inappropriate. Inappropriate sexual behavior is a wide term and includes, but
is not limited to, sex talk (foul language and explicit comments), sexual acts (touching,
grabbing, exposing, or masturbating, which can occur in private or in public areas), and
implied sexual acts (openly reading pornographic material or requesting unnecessary
genital care). The prevalence of hypersexuality in people with dementia is reported in
different studies to range between 2% and 30%. This behavior can be traumatic to the
partner and to the whole family. Some unfortunate individuals can get in legal trouble as
a consequence of their uninhibited behaviors.
 
It is important to understand that increased sexual interest may be a manifestation of an
unmet need. Some partners (who are providing caregiving) may become angry, hurt or
resentful toward the affected person if they excessively pursue the partner or start
approaching strangers for intimacy. This might be a way of expressing a need for
comfort, touch and safety. At times, massages, hand rubs, or kind and loving words
may be adequate to meet this need and may help reduce sexual acting out. Many
nursing homes are getting better at recognizing the importance of preserving sexual
intimacy for their residents, and provide the space and privacy necessary for that.
Some medications (such as benzodiazepines and levodopa) and substances (alcohol
and Marijuana) may further impair an affected person’s judgment and lead to an
inappropriate or increased sexual behavior. Hence, it is best to avoid using such
medications in dementia or find safer alternatives.
 
Hypersexuality in dementia has been understudied and there are no specific FDAapproved
medications to directly target this behavior. Non-pharmacological approaches
should be utilized first before administering medications to manage hypersexuaity. Such
approaches may include redirection, minimizing stimulation, clothes modification (that
open from the back), and stuffed dolls for personal pleasure/comfort. Nursing staff
education/training on handling such situations is necessary.
 
If behavioral approaches are not successful, there has been some success in using
mood stabilizers, antidepressants, antipsychotics and sex-hormone blocking agents to
control hypersexuality. The goal is to maintain the patient’s safety and dignity, as well as
the caregivers’ safety.
 
With the baby boomers aging and becoming impacted by dementia, an increasingly
important subject on the rise is sexuality in LGBTQ individuals with dementia. This age
group is more open about their sexual orientation compared to their predecessors.
Nursing homes and staff need to examine their own attitudes and be educated to be
more culturally sensitive to the needs of the LGBTQ population.
 
Advice for the caregiving partner:
• Be mindful of how dementia changes your dynamics as a couple. Try to enhance
your partner’s independence and involvement in family responsibilities in the
earlier stages. In the later stages, consider additional caregiving help to reduce
your burnout and preserve the couple dynamics rather than shifting mainly to a
patient-caregiver dynamics.
 
• Your partner may lose some of their cognitive abilities, but emotional memories,
especially auditory, visual and tactile memories that you built together as a
couple will mostly stay intact into the later stages. Cherish and reminisce on
those memories together, which can help you bond and reconnect on an
emotionally intimate level.
 
• If one of you is not interested in sexual intimacy, find other physical and
emotional ways to meet the need for closeness, e.g. back rubs, kind and loving
words, engaging in shared activities. Music and dancing are great ones!
 
• On the other hand, if intimacy is being forced upon you despite your redirection
and distraction attempts, you should not endure this behavior. Please seek help
from health care providers or safety from legal authorities, if the situation
becomes unsafe.
 

Finding the Right Place

For the Person with Dementia

 
https://www.nia.nih.gov/alzheimers/publication/
when-you-need-help/finding-right-place-person-ad
Updated: April 14, 2015
 
Sometimes you can no longer care for the person with dementia at home. The person
may need around-the-clock care. Or, he or she may be incontinent, aggressive, or
wander a lot. It may not be possible for you to meet all of his or her needs at home
anymore. When that happens, you may want to look for another place for the person
with dementia to live. You may feel guilty or upset about this decision, but remember that
many caregivers reach this point as the disease worsens. Moving the person to a care
facility may give you greater peace of mind. You will know that the person with dementia
is safe and getting good care.
 
Steps to take
Choosing the right place is a big decision. It's hard to know where to start.
 
1. Gather Information
• Talk with your support group members, social worker, doctor, family members,
and friends about facilities in your area.
 
• Make a list of questions to ask about the facility.
 
• Call to set up a time to visit.
 
2. Visit Assisted Living Facilities and Nursing Homes.
Make several visits at different times of the day and evening.
 
Ask Yourself:
• How does the staff care for the residents?
 
• Is the staff friendly?
 
• Does the place feel comfortable?
 
• How do the people who live there look?
 
• Do they look clean and well cared for?
 
• Are mealtimes comfortable?
 
• Is the facility clean and well maintained?
 
• Does it smell bad?
 
• How do staff members speak to residents—with respect?
 
Ask The Staff:
• What activities are planned for residents?
 
• How many staff members are at the facility? How many of them are trained to
provide medical care if needed?
 
• How many people in the facility have AD?
 
• Does the facility have a special unit for people with AD? If so, what kinds of
services does it provide?
 
• Is there a doctor who checks on residents on a regular basis? How often?
 
You Also May Want To Ask Staff:
• What is a typical day like for the person with AD?
 
• Is there a safe place for the person to go outside?
 
• What is included in the fee?
 
• How does my loved one get to medical appointments?
 
Talk with other caregivers who have a loved one at the facility. Find out what they think
about the place.
 
Find out about total costs of care. Each facility is different. You want to find out if longterm
care insurance, Medicaid, or Medicare will pay for any of the costs. Remember that
Medicare only covers nursing home costs for a short time after the person with dementia
has been in the hospital for a certain amount of time.
 
If you're asked to sign a contract, make sure you understand what you are agreeing to.
 
Assisted Living Facilities
Assisted living facilities have rooms or apartments. They're for people who can
mostly take care of themselves, but may need some help. Some assisted living
facilities have special dementia units. These units have staff that check on and care for
people with dementia. You will need to pay for the cost of the room or apartment, and
you may need to pay extra for any special care. Some assisted living facilities are part of
a larger organization that also offers other levels of care. For example, continuing care
retirement communities also offer independent living and skilled nursing care.
 
Group Homes
A group home is a home for people who can no longer take care of themselves. Several
people who can't care for themselves live in the home. At least one caregiver is onsite at
all times. The staff takes care of the people living there: making meals, helping with
grooming and medication, and providing other care. You will need to pay the costs of the
person with AD living in this kind of home. Remember that these homes may not be
inspected or regulated, but may still provide good care.
 
Check out the home and the staff. Visit at different times of the day and evening to see
how the staff takes care of the residents. Also check to see how clean and comfortable
the home is. You'll want to look at how the residents get along with one another and with
the staff.
 
Nursing Homes
Nursing homes are for people who can't care for themselves anymore. Some nursing
homes have special dementia care units. These units are often in separate sections of
the building where staff members have special training to care for people with cognitive
disorders. Some units try to make the person feel more like he or she is at home. They
provide special activities, meals, and medical care.
 
In many cases, you will have to pay for nursing home care. Most nursing homes accept
Medicaid as payment. Also, long-term care insurance may cover some of the nursing
home costs. Nursing homes are inspected and regulated by State governments.
 
How To Make Moving Day Easier
Moving is very stressful. Moving the person with AD to an assisted living facility, group
home, or nursing home is a big change for both the person and the caregiver. You may
feel many emotions, from a sense of loss to guilt and sadness. You also may feel
relieved. It is okay to have all these feelings. A social worker may be able to help you
plan for and adjust to moving day. It's important to have support during this difficult step.
 
Here Are Some Things That May Help:
• Know that the day can be very stressful.
 
• Talk to a social worker about your feelings about moving the person into a new
place. Find out how to help the person with dementia adjust.
 
• Get to know the staff before the person moves into a facility
 
• Talk with the staff about ways to make the change to the assisted living facility or
nursing home go better.
 
• Don't argue with the person with dementia about why he or she needs to be there
 
Be An Advocate
Once the person has moved to his or her new home, check and see how the person is
doing. As the caregiver, you probably know the person best. Look for signs that the
person may need more attention, is taking too much medication, or may not be getting
the care they need. Build a relationship with staff so that you work together as partners.
 
Additional Resources:
Centers for Medicare and Medicaid Services (CMS)
1-800-MEDICARE (1-800-633-4227)
TTY: 1-877-486-2048
www.medicare.gov
 
CMS has a guide to help older people and their caregivers choose a good nursing
home. It describes types of long-term care, questions to ask the nursing home staff,
and ways to pay for nursing home care. CMS also offers a service called Nursing Home
Compare on its website. This service has information on nursing homes that are
Medicare or Medicaid certified. These nursing homes provide skilled nursing care.
Please note that there are many other places that provide different levels of health care
and help with daily living. Many of these facilities are licensed only at the State level.
CMS also has information about the rights of nursing home residents and their
caregivers.
 
Joint Commission
1-630-792-5800
www.qualitycheck.org
www.jointcommission.org
 
The Joint Commission evaluates nursing homes, home health care providers, hospitals,
and assisted living facilities to determine whether or not they meet professional
standards of care. Consumers can learn more about the quality of health care facilities
through their online service atwww.qualitycheck.org.
 
AARP
1-888-OUR-AARP (1-888-687-2277)
www.aarp.org/home-garden/housing
! Assisted Living Federation of America
1-703-894-1805
www.alfa.org
 
National Center for Assisted Living
1-202-842-4444
www.ahcancal.org/ncal
 
National Clearinghouse for Long Term Care Information
Administration for Community Living
Washington, DC 20201
1-202-619-0724
www.longtermcare.gov