The Dartmouth Memory Handbook

Section 10: Taking Care of The Care Partner

A Dozen Principles for Care Partners

Adapted from Blandin K and Santulli RB:
The Emotional Journey of the Alzheimer’s Caregiver
Lebanon NH: University Press of New England, 2015
 
Caring for someone with Alzheimer’s disease or another form of dementia is certainly
one of the most stressful challenges a person can undergo. For some, the degree of
strain is so great that it can interfere with providing good care, and can lead to hastened
placement of the individual in a facility. The stress of caring for a loved one with
dementia can be harmful to the care partner, as well. Taking good care of oneself must
be the first job of anyone who is caring for someone with a cognitive disorder. A care
partner can only manage the many tasks and challenges involved if he or she is in good
shape mentally and physically. With this is mind, here are a dozen principles for care
partners to follow:
 
1. Family Care Partners Must Take Care of Themselves First
Taking care of oneself must be the first job of any dementia care partner. This may
seem either obvious, or selfish, but it is an important principle that is frequently
overlooked by care partners. One can only be a helpful care partner if one is able
to function effectively. Anyone who has flown on an airplane has heard the flight
attendant say, during the initial safety instructions, that if there is a loss of cabin
pressure, oxygen masks will fall from the ceiling; passengers are instructed to put
on their own mask first, and then help the person with whom they are traveling to
put on theirs, if necessary. Why is this? Because if there were a loss of oxygen,
the person who needs to help another must be sure that he or she won’t pass out
from lack of oxygen first. If that happens, the unconscious individual is of no use to
someone who may need assistance. The principle is the same with providing care
to a loved one with dementia. If the care partner does not insure his or her own
wellbeing, it will not be possible to be optimally helpful to the afflicted person who
needs her assistance. This is not selfishness; it is sensible planning that will make
it possible for the care partner to give the care that is needed to the loved one with
dementia
 
There are, of course, many components to self - care. To some extent, in fact, all of the
principles that follow are ways of insuring one’s own wellbeing. However, in following
the airplane analogy, maintaining one’s own physical wellbeing should be considered
at the top of any list. Dementia care partners frequently neglect their own health needs
while focusing on the needs of the person with the disease. Their explanation is often
that there simply isn’t enough time to do both, and while it is certainly easy to
understand that point of view, it can be a dangerous one. It must be emphasized that a
sick or deceased care partner cannot be helpful to the person in their charge. Care
partners – particularly spousal care partners, who are likely to be elderly and therefore
more vulnerable to physical illness themselves - should visit their primary physician
regularly for evaluation and monitoring. Blood pressure or blood sugar may become
abnormally elevated due to the stress of the illness, or significant amounts of weight
may be lost or gained. Other chronic illness may be worsened either by the stress of
providing care, or simply because of the natural history of the illness, particularly if it is
not attentively managed.
 
Another area of physical wellbeing that the family care partner may need to address is
difficulty with sleep. Insomnia is a common problem for those who are caring for, and
worrying about, a loved one with serious cognitive difficulties. But chronic exhaustion
from insufficient sleep makes any task, including this one, much more difficult and
stressful.
 
What should the care partner who is having insomnia do to insure adequate sleep?
One thing the care partner should definitely not do is to use alcohol to try to improve
sleep. While a drink of alcohol before bed may make it easier to fall asleep for some
people, for many this is not the case, and increasing the amount of alcohol in an effort
to get to sleep is definitely fraught with problems. Even if alcohol before bed sometimes
shortens sleep “latency” (the time it takes to fall asleep) it is often associated with more
frequent awakenings during the night as the level of alcohol in the bloodstream
diminishes. Alcohol at bedtime will also lead to more awakenings for the bathroom at
night, and getting back to sleep after awakening to urinate can be a difficult problem. In
addition, regular alcohol intake can increase depression, and of course lead to alcohol
abuse or addiction.
 
It can be useful for the care partner having difficulty sleeping to attempt to determine
the reason for the problem. What specifically about providing care is leading to
anxiety? During the day, the care partner may be able to keep these concerns from
consciousness by being busy or distracted. But at night, when trying to fall asleep, or
return to sleep after awakening, these concerns or anxieties may come to the surface.
There may be specific worries or merely a feeling of being nervous or ill at ease. Some
attribute this to not being able to fall asleep, but that is usually the result and not the
cause of the problem. Even though the whole experience of caring for a loved one with
dementia is a cause of anxiety for most family care partners, it is important and helpful
to try to determine those aspects of the situation which are most anxiety provoking.
Finally, whatever psychological issues may contribute to sleep disturbance, sometimes
the spousal care partner is kept awake at night by the loved one’s restlessness,
snoring, or talking during the night. If that is the case, it may be reasonable for the
spousal care partner to consider sleeping in a different room from the person with the
disease. It may be more important, overall, for the spouse to be rested, energetic and
fully attentive to the afflicted spouse than to share the marital bed.
 
Similarly, physical exercise is an important tool not only for promoting good general
health, but also for releasing some of the tensions caused by caring for a loved one with
the disease. Many care partners report that exercising regularly is absolutely essential
to their overall emotional wellbeing.
 
2. The Responsibilities of Caring for Someone with Dementia Must be
Assumed by More than One Person
Although there is usually one primary care partner (often a spouse, or a daughter), the
role of the primary care partner should be as the leader of a group of family and/or hired
care assistants. Providing all the care for someone with dementia is not something that
any care partner should assume single-handedly; there should be a team of individuals
to regularly provide care for the person with dementia. This is a different view than
many care partners, particularly spouses, have about the task. Those care partners
often feel that they will only seek the assistance of another when it is, for some reason,
impossible for them to manage the particular task. “I’ll do everything except when I
absolutely cannot” may be a very noble (and very common) attitude, but it is a recipe for
extreme care partner stress.
 
In keeping with this principle, it is necessary for the primary care partner to learn how to
recognize when there is a need to ask for a “favor”, and become comfortable asking for
it. This could be asking a neighbor to pick up something at the supermarket; asking a
friend to sit with the afflicted individual for an hour or so while the care partner does an
errand; or asking an adult child to accompany the care partner and the person with
dementia to the doctor, for example. One of the most common hurdles care partners
face is their reluctance to ask others for help when they need it. But it is important to
recognize that asking another person for a favor is generally a favor for both the
person who asks and the person who does the favor. Most people feel virtuous and
happy when they are able to help others. The care partner will quickly learn if a
neighbor or supposed friend resents being asked for the occasional favor; but most of
the time, friends or family members are glad to be able to assist in this way; sometimes,
it even “makes their day”.
 
3. Care Partners Need Regular and Planned Periods of Respite
Another corollary of the principle of dividing the duties of care with others has to do with
the vital importance of respite for every care partner. Respite means not only that the
primary family care partner has time when he or she is not engaged in providing care
tasks, but also, time when the primary family care partner can be relieved of the
psychological burden of worrying about the person with the disease. Running out to the
supermarket for an hour, leaving the afflicted individual home alone, rushing through
shopping while worrying all the while about the person at home alone is not respite. Of
course most family care partners will be concerned about the welfare of their loved one
even when they are not with them. But the family care partner needs to feel that, in the
case of a more mildly afflicted individual, the person will be perfectly safe home alone
for the time the care partner is out of the house. In the case of longer periods away, or
with more impaired individuals, it is necessary for the family care partner to have a solid
feeling of trust in whomever is providing care during the absence.
 
Respite is different from the “favors” described above. While a “favor” is a one-time, or
occasional, request for help from a friend or family member, respite is planned ahead of
time, and occurs on a regular basis. Care partners benefit not only from having time
when they are freed of the duties of providing care, but they also benefit from knowing
ahead of time when such breaks will occur. Almost everyone who works appreciates
knowing that on the weekend, for example, they will not have to go to work, and they
are free to plan other desired or needed activities. The same principle applies in caring
for a loved one with dementia. Knowing that every Tuesday at 9 AM, for example, a
hired care worker will arrive to spend the day with the loved one makes it much easier
for the care partner to manage the other six days of the week. Too many primary care
partners (at least in the earlier stages of the illness) feel that they can do the job singlehandedly,
and only ask for the occasional favor rather than arranging, from the
beginning, for regular periods of respite. Such care partners need to change their view
of the situation from “is it possible for me to do this all alone?” to “is it best for me (and
the person for whom I care) to do this all alone?” An exhausted or irritated care partner
is not in a good frame of mind to care for someone with dementia.
 
One of the most valuable forms of respite is an adult day program. In an adult day
program for people with cognitive disorders, trained staff members attend to the
program participants, while the primary care partner goes to work, or another activity, or
simply has a period of respite. In a good adult day program, family care partners can
feel that their loved one is safe, and positively engaged; in short, that the program is
much more than a “babysitter”. There is, of course, an important benefit to the person
with dementia, as well: he or she has the opportunity to socialize with others, pursue
activities which might not be possible at home, and have a level of stimulation that can
be quite beneficial. Not all people with dementia enjoy going to adult day care, at least
initially, but once the initial reluctance is overcome, it can become an activity that the
individual anticipates with pleasure.
 
4. Family Care Partners Need to Maintain a Social Life and Interests
Separate from the Person with Dementia
Many family members have reported that their ability to continue a part-time job, a
weekly card game, volunteering at the local museum, or a weekly lunch with a group of
friends has been extremely valuable in helping them cope with the challenges of taking
care of a loved one with dementia. The care partner needs to maintain his or her own
sense of identity, independent from that of being a care partner, and continue to pursue
those activities that have been important over the years. This should include social
contact with persons other than the afflicted individual.
 
5. Family Care Partners Should Learn as Much as Possible about the
Disease
Anyone who takes on the task of caring for someone with Alzheimer’s disease or
another form of dementia should strive to learn everything they possibly can about the
illness: the typical signs and symptoms; the usual course of the disease; common
behavioral problems and how to manage these; the latest information about treatments;
and many other topics. Knowledge is critical in managing any chronic illness, but this is
especially true in the case of Alzheimer’s disease or other dementia.
 
Learning about the disease can come from many sources: reading some of the many
excellent books written for care partners; attending lectures or seminars at local
hospitals or other organizations; or attending a support group, for example.
Increasingly, the Internet contains a wealth of material about Alzheimer’s disease and
other dementias. Much of this is accurate and useful, but as with any information on
the Internet, one should be certain that the source is reputable and up-to-date. The list
of Resources at the end of this volume includes a number of useful and reliable Internet
sites as well as a variety of books written primarily for care partners.
 
6. The Family Care Partner Should Engage in a Comfortable, Open
Dialog with the Afflicted Individual Regarding the Disease.
While it may sometimes seem that talking about Alzheimer’s will create stress for the
person with the disease (as well as for the care partner) eventually the opposite
becomes the case. Family members – care partners and those with the disease alike -
report they are much more comfortable once they have been able to be able to talk
openly about the illness. Of course, this must be done in a way that is not judgmental
or further diminishes the individual’s already fragile self-esteem. It may be difficult to
“break the ice” on this topic but once that is done, it is very beneficial for both to feel
that that the illness can be openly examined. The “elephant in the room” needs to be
acknowledged and talked about, and once that is done, both parties will usually feel a
sense of relief and a greater degree of comfort with each other.
 
7. The Family Care Partner Should Talk about the Illness with Close
Family and Friends
Some care partners feel that to talk about their loved one’s disease with others is
disloyal. While that sentiment is understandable, it is based on the false premise that
dementia is something to be ashamed about, or hidden. While there remains significant
stigma regarding these illnesses (see p. 179), unfortunately, it is certainly not helpful to
let old-fashioned notions about dementia interfere with the care partner sharing with
close friends and others about this very significant challenge now being faced. This is
not to say that the care partner should openly discuss the illness with everyone; clearly
it is a matter of judgment to determine with whom one should discuss the illness. But
hiding something which is so central in one’s life – being a care partner for a loved one
with dementia – is both unnatural and unnecessarily stressful for the care partner. He
or she needs and deserves the opportunity to receive as much support and
understanding as possible from close friends and associates.
 
8. Family Care Partners Should Regularly Attend a Care Partner’s
Support Group.
The vital role of support groups was discussed above (p. 245), but it is important once
again to emphasize their importance for those who are coping with caring for a loved
one with significant cognitive difficulties. Many care partners are reluctant to attend a
group, feeling they do not “need” it. They may feel that going to a support group might
help others, but would be of no value to them. In some cases, care partners are open
to going, but can’t leave their loved one home alone for the length of time it takes to
travel to the group, attend the session, and travel home again. This is a situation in
which it may be necessary to ask for a “favor” from a friend, relative, or neighbor.
Having someone spend time with the afflicted individual for a couple of hours while the
care partner attends a support group is a wonderful gift, and one that the care partner
should not hesitate to request, whenever necessary.
 
9. Family Care Partners Need to Find Activities They Can Enjoy
Together with the Person with the Disease.
A common challenge family care partners face is being able to identify activities that are
appropriate, achievable, and enjoyable for the person with dementia. At times, the
activities the afflicted person previously enjoyed are no longer possible. For example, a
person who has previously taken pleasure in woodworking may no longer be able to
use power tools safely. Another person may have enjoyed doing crosswords, but may
no longer have the necessary vocabulary or problem-solving skills. It is important not to
try to have the person attempt tasks that are no longer within his or her capabilities; this
only becomes another frustration or failure experience for someone who has already
experienced many other frustrations and failures.
 
Care partners should take careful note of those abilities that have been preserved in the
person with the disease, and focus on activities that make use of capacities that remain.
Examples include listening to music, or enjoying paintings or other artworks in a
museum. The ability to appreciate music and art (for someone who has previously
enjoyed these activities) appears to involve parts of the brain that do not deteriorate
until later in the disease, compared to short term memory or the ability to perform
complex tasks. Other activities that do not rely on short-term memory, and particularly
those which may tap into long-term memory stores or longstanding areas of interest can
be particularly enjoyable for someone with Alzheimer’s disease or other form of
dementia. Examples include watching a sporting event, live or on television; sitting at
the beach; going for drives in the country; having a snack of some comfort food; looking
at old family photo albums; watching old movies on television; visiting with pets or
young children; simple gardening, and many others. Finding these activities and
pursuing them relies on the motivation and creativity of the primary family care partner.
The person with the disease is usually no longer able to initiate this type of
spontaneous activity.
 
However, in addition to the importance of identifying suitable activities for the person
with the disease, it is critical to find activities that the afflicted individual and the family
care partner can enjoy together. This can be one of the most positive ways to lessen
stress in the care situation. Of course, these mutually enjoyable activities will be
different for every pair. One pursuit, however, that is particularly valuable in this regard
is walking together. Not only is there pleasure in the activity itself, but also, walking
together promotes another crucially important activity: talking to each other. Many
couples find that a daily stroll is not only an enjoyable opportunity to experience the
outdoors and get some valuable exercise; it is also an opportunity to casually converse
together. It may be hard to know if there is more benefit derived from the walking or the
talking, but when combined, this is a wonderful activity for both the person with the
disease, and his or her family care partner.
 
10. Family Care Partners Need to Find and Celebrate the Positive
Aspects of Providing care.
While having a loved one with Alzheimer’s or other type of dementia and being a family
care partner is certainly not a task that anyone would choose, and while there are many
very difficult aspects to the undertaking, it is not all negative. Nearly every care partner,
except perhaps those who are in highly conflicted relationships with the afflicted person
or are already severely stressed, depressed, or burned out, can point to positive
aspects of the undertaking. When asked to cite what has been positive about being a
care partner (a very useful exercise which care partners should practice on
themselves), some will indicate that their love for their family member has grown as a
result; others will say that they have learned, for the first time, the art of patience; others
will talk about the many tasks they have been forced to learn that they had never
attempted previously, and did not realize they possessed the capability to undertake
(for example, managing the finances; learning to cook; becoming proficient at
household repairs, and so forth). Some will focus on how much they have enjoyed
some of the activities they do regularly with the afflicted person – going for a walk,
listening to music together, car rides, for example. Others indicate that being a care
partner has brought them closer to their religion, and they have learned how much
comfort that can bring. Still others will simply indicate that they have learned that they
can survive and prosper in spite of being saddled with such an enormous task.
 
Research has shown (and common sense reinforces) that being able to find and focus
on the positives of providing care helps the family member endure the task with greater
equanimity, less stress and less depression. Of course, this is generally true with any
difficult activity: being able to see the benefits it offers makes it much easier to
undertake. One does not need to minimize or ignore the difficult aspects of caring for a
loved one with the disease, or deny the enormous sense of grief that is an inevitable
accompaniment of this experience. But one should try to see the positive side, as well.
It is a matter of balance and perspective.
 
11. Family Care Partners Need to Experience a Sense of Control
People who have a very strong need to feel “in control” tend to have a very difficult time
as care partners for someone with Alzheimer’s disease or other type of dementia. The
very nature of dementia is that the disease is in control - certainly not the care partner.
For example, the family care partner may hope that the person with the illness is going
to have a “good day” today, because company is coming over, or because there is a
doctor’s appointment, but the day may end up being a very difficult one, perhaps
because the afflicted individual did not sleep well, or has a cold, or for no discernible
reason is more confused, more depressed, more irritable, more contrary, or more
distracted. Or perhaps the family care partner may wish to spend some time with the
loved one sorting through belongings, in order to clean up and discard unwanted or
unneeded items. On a good day, the individual may be very cooperative and helpful
with this type of activity, but on the day in question, again for unpredictable reasons, the
person with the disease may easily become preoccupied with other matters, won’t
consider giving up any items, or simply cannot attend to the task at all. Although the
care partner may have had one plan in mind, the disease forced an unexpected change
in the day’s agenda. In both examples, the behavior of the person with the disease was
unpredictable: that is a central feature of the disease. When behaviors and the general
events of the day are so difficult to know ahead of time, it is easy to see why care
partners can experience an uncomfortable sense of not being in control.
 
One of the most important tasks for the family care partner – particularly those who
have always had a high need for control – is to determine which aspects of the situation
he or she is able to predict or control, and to focus on those, while recognizing and
accepting the many aspects of the care situation which cannot be controlled. Too often,
care partners become angry, feeling that the person with the disease is purposely
thwarting their need for control, but this is, of course, not the case.
 
That which the family member has the best chance of being able to control is his or her
own behavior and emotional reactions. One must recognize and accept the many
aspects of the situation over which one has very limited or no influence. It may be very
difficult for a care partner who needs to be in control to learn to accept this with
equanimity, but it is certainly a worthwhile effort. Many care partners come to realize
how important being in control has been to them only when they are faced with the loss
of control that dementia brings.
 
12. The Family Care Partner Needs to Recognize When He or She Can
No Longer Manage, and Act Accordingly.
There frequently will come a point, usually after years of caregiving, when the care
partner feels no longer able to continue the task. It may be that he or she has “burned
out”; or it may be that the physical and emotional demands of the task have simply
become too great to continue. Too often, care partners will push themselves beyond
this point, feeling either that there are no practical options or that it would be shameful
or disloyal for them to “give up”. This attitude, while understandable, leads to enormous
distress for the care partner, and can lead to a potentially dangerous situation for the
person with the disease. Care partners need to understand that it is neither shameful
nor disloyal to recognize the point when a change needs to be made. This may mean
that placement in a facility needs to occur. Or it may mean that another family member
needs to take over the task of caring for the loved one at home. It is wise for care
partners to develop a plan, well before it becomes necessary, regarding what they will
do if and when they are no longer able to continue providing care. Having to make
these arrangements in haste (if, for example, the primary family care partner were to
become acutely ill) is always more difficult and often results in a less satisfactory
solution. Visiting local care facilities and discussing with other family members or a
financial advisor the economic requirements ahead of time will make the task much
easier when the time comes. But very often the greatest obstacle to overcome is the
attitude of the family care partner, who strongly resists considering that institutional
placement may ever be necessary or even acceptable. For many care partners, the
feelings of guilt this evokes are nearly intolerable. Every family care partner should
seriously consider how he or she will know when placement is inevitable, and what
steps need to be taken when that time comes. Making such preparations ahead of time
should, in fact, be viewed as an act of great loyalty, and love.
 

Support Groups for Care Partners

Robert B. Santulli, MD
(modified September 2016)
 
The importance of support groups is greatly underappreciated, and support groups
themselves are underutilized. This is especially striking considering their value, and the
fact that there is no charge for attendance at a group, when nearly everything else
involved with caring for someone with dementia costs money, and often a great deal of
it.
 
Most support groups are for family members of people with the disease; these support
groups generally do not include the individuals with dementia. The primary reason for
this exclusion is that family members are reluctant to speak openly about their concerns
and frustrations in front of people who have cognitive impairment. For this reason,
persons with dementia are generally discouraged from attending these meetings, since it
is crucial that support group members feel as free as possible to express themselves, In
many areas, there are support groups for persons with early stage illness. These can be
particularly valuable for the individual with early stage dementia.
 
The value of family member support groups lies in several areas. One has to do with the
opportunity to learn about the disease, including its common symptoms and behaviors,
and to gain information about how to understand and manage these symptoms from the
perspective of those who are coping with it on a regular basis. Support groups offer an
abundance of helpful, practical tips and tools for dealing with the disease. For example,
attendees can learn about what new symptoms to expect as their loved one’s illness
progresses; how to handle medical appointments; practical ways of assessing driving
and dealing with driving cessation; recommendations about traveling; coping with the
holidays; what to expect from medications; long term care considerations; and
information about local clinical trials of medications being tested for efficacy. Usually,
the most valuable information offered in a support group comes not from the
professionals who facilitate the group, but from those who are living with the disease on
a daily basis through a loved one who is ill.
 
A second reason why going to a family member support group is so important lies in the
interpersonal realm. Caring for a family member with Alzheimer’s disease or other
dementia is a unique experience: only someone who has cared for a loved one with the
disease can completely understand what is involved on a daily basis. Conversations
with close friends – as helpful as these certainly are – cannot replace the opportunity to
interact with others who have had the experience of caring for someone with dementia,
as well. Of course, it is very helpful to talk with a close friend who is also an afflicted
family member, but even that one-to-one situation frequently does not match the
experience of being in a care partner’s support group, where one has the opportunity to
talk with numerous people who have had or are currently having similar experiences.
There is something intangible yet very real about the group process (and the absence of
people with the disease) that brings thoughts, experiences and feelings to the surface
that tend not to come up in one-to-one conversations.
 
A phrase often used to describe the value of support groups is “you are not alone”. The
importance of that simple concept cannot be overstated. Family members who care for
a loved one with dementia often feel (before attending a support group) that their
particular situation is so unique that no one else could possibly understand it, or help.
This leads to feeling isolated and alone with the burdens of the disease. Even though a
family member may be aware, intellectually, that others experience similar difficulties,
the sense of comfort and reassurance that comes from interacting with others who have
similar experiences is more powerful than any intellectual awareness can provide.
Perhaps even more valuable than learning that others have similar experiences is
learning that others have similar feelings in reaction to caring for someone with the
disease. Learning about difficult emotions – for example, intense sadness, grief, guilt,
anger, frustration - from support group members, as they talk about (and often display)
their feelings may give the family member a sense of “permission” to experience these
same emotions. Realizing that others experience these feelings, and hearing about how
they cope with them may help the family member identify these feelings in him or herself
for the first time. And for the family member who is already aware of these feelings (but
perhaps uncomfortable with them), learning first hand from others who are having similar
emotions encourages a greater degree of comfort, acceptance, and further selfexploration
than previously. This is a critical step in moving forward as a care partner of
someone with dementia.
 
In addition to providing a sense of “permission” for difficult emotions, learning that other
family members have similar experiences and feelings helps reduce the sense of stigma
surrounding the disease and its victims (see p.179). While attending a support group
may do little to lessen the stigma felt by the general public about Alzheimer’s disease
and its victims, it certainly can help the family member feel more accepted and
understood. It also helps the family member feel that he or she is not being looked down
upon because of the illness, at least within the smaller circle of the group. The care
partner is able to feel more accepted and less stigmatized. Gradually, that sense of
acceptance can extend into other areas of the family member’s interpersonal realm, as
well.
 
Occasionally, a family member might feel and express scorn or prejudice toward the
individual with the disease, and verbalize these feelings in the support group, perhaps
hoping or assuming that other family members feel similarly. While these negative
feelings are often associated with a dysfunctional relationship that likely long precedes
the onset of the disease, the stigmatizing attitudes expressed by the family member
toward his or her spouse or parent can be felt by the other group members as an attack
on all of their loved ones. While the group members may empathize with the sense of
burden felt by this family member, they may also enter into a discussion with the person
who holds these stigmatizing attitudes, perhaps hoping to alter his or her views of the
illness. To the extent that the stigmatizing family member is able to hear and consider
different points of view, in can be very helpful in modifying his or her opinions and
prejudices.
 
Format of the Group
It is important that the facilitator spell out general guidelines, verbally or in writing,
particularly when new members are present. These guidelines should include the fact
that everyone in the group needs to be given the opportunity to speak, if he or she
wishes, without fearing that what is said will be criticized by the other members. Other
than that, all comments, and the appropriate expression of any emotions are completely
acceptable. It is absolutely prohibited to talk about anything discussed in the group with
others who are not a part of the group. Participants need to be comfortable that what
they say in a group is completely confidential. This is particularly critical when groups
meet in small towns, but it applies everywhere.
 
Finally, the support group should not be used for any commercial purpose whatsoever;
no one who attends may solicit business for him or herself or anyone else, and no
dementia - related products (or other products) should be promoted. For example, if a
family member wishes to talk about a new GPS device developed for use by potential
wanderers, that might be very helpful, but it is incumbent upon the member or the
facilitator to insure that other similar devices that are available in the area are also
discussed.
 
Most general groups have open enrollment and are open-ended; that is, individuals can
decide to attend at any time, and can continue to come for as long as they find it helpful.
Some groups do have specified starting and finishing dates for a group, but that is less
common for the general group than it is for some of the specialized groups, to be
discussed below.
 
Support groups should take place in a comfortable environment where the participants
can sit in a circle facing each other, rather than in classroom-like seating or other
arrangements. It is important that the setting be private and that no interruptions occur
except for emergencies. Cellphone calls and texting are actively discouraged. Some
groups provide light refreshments. Most groups do not require individuals to sign up in
advance, or provide notification if they are unable to attend a particular meeting. The
overall goal is to make the support group as “user-friendly” as possible, and it is well
known that someone caring for a person with Alzheimer’s disease does not have full
control over his or her own schedule. No fees are charged for attendance at any family
member support group.
 
Specialized Support Groups
As noted above, most support groups are general ones, for all family members.
However, in some areas (particularly in more populous ones), specialized groups may
exist, and these can be particularly helpful. For example, groups for adult children of
people with dementia can be useful, as these individuals often share specific needs and
stresses that might be somewhat different than those of spouses. Groups for adult
children are often held in the early evening, since children of people with dementia often
need to be at work during the day, whereas most spouses of persons with the illness are
retired and may be reluctant or unable to go out at night.
 
Other specialized groups include ones for male family members, long distance family
members, family members of persons in a particular assisted living, nursing facility or
retirement community, and the like. Because of the specialized nature of these groups,
they are often smaller than the general groups described above, and it can be helpful for
a family member to attend one of the general groups regularly, as well as attending a
specialized group.
 
Milestone Support Groups
Milestone support groups are focused around a particular event in the life of a person
with dementia and the family. The most important milestones occur at the time of
diagnosis, placement in a facility, and death. Such milestone groups usually have a
fixed number of sessions, meeting more frequently over several months. Family
members join at the beginning of the series, and generally attend for the full course of
sessions. Often these groups have an educational component as well as a supportive
goal. Family members can benefit from a focused group around these very difficult
milestones, by having the opportunity to talk in depth with others who share their specific
situation.
 
Evidence for Effectiveness
Studies that have shown that attendance at a family support group, often along with
other support and education activities, can be tremendously beneficial to family
members. Such participation decreases stress, is associated with lower levels of
depression, and may even be associated with delayed placement in a nursing home.
Much of the benefit of support groups may be difficult to quantify in a research study, but
is quite evident from talking to those who attend regularly. Family members will speak
about the group as a “lifeline” at a very difficult time in their lives; as a vital outlet and
connection in an otherwise very isolating situation; as the only place where the family
member can feel genuinely understood; and as an absolute necessity in order to
maintain sanity, just to mention a few of the comments that are commonly heard.
 
Utilization of Support Groups
Despite its myriad benefits and lack of cost, support groups are grossly underutilized.
There are numerous reasons why this is so. One reason is that many family members
find it difficult to get out of the house for the length of time necessary to travel to the
group, attend the group, and then travel home again. They feel they are not able to
leave their loved one home for that length of time, and don’t have the opportunity or the
desire to hire someone or to ask a friend to sit with the person with Alzheimer’s so that
they can attend the group. Some groups are able to arrange for caregiving in an
adjacent room while the family support group meeting is occurring.
 
Others who are reluctant to attend a support group will indicate that they don’t want to
hear about the problems that they may face in the future from those who have loved
ones who are further along in the disease course. This type of avoidance is a defense
mechanism, which occurs because of the significant anxiety that the illness causes in
the care partner. It seems to them that it is simply easier to avoid the whole thing. This
is an understandable defensive reaction, but it is not very effective is lessening the
distress caused by the illness, and it is not helpful to the person suffering from the
disease. Another reason that is offered for not attending a support group is that it is in
an inconvenient location or an inconvenient time. Often, however, these are excuses
used by family members who have other, defensive reasons for not wanting to attend.
 
More commonly, family members (especially, but not exclusively, male family members)
feel that they don’t need a support group. They feel that to attend one implies that they
are having trouble coping on their own with the task of caring for a loved one with the
disease. Some family members feel that they would not want others to think that they
were having difficulty, or may not even want others to know that the illness is present. In
addition, many people are simply reluctant to share their personal lives with strangers,
and may feel that to talk about his or her loved one with non-family members is
somehow disloyal. While these feelings may be understandable, they are rooted in the
stigma surrounding the disease, and not its objective reality. Presumably, these family
members would not feel reluctant to share that their loved one had a broken leg, or
needed to have a cataract removed. Ideally, it should be no different when the affliction
is dementia.
 
It is quite common that a family member who has expressed reluctance to attend a
support group – not feeling it is “necessary” or having other rationalizations – will, once
he or she has been encouraged to attend a few times, become a “believer” and a regular
attendee. Skepticism about the benefits of a group is common, but can often be
overcome once the individual realizes that the group is welcoming, friendly, offers
valuable information, and is an important source of support and community.
 

Pressure Points: Alzheimer’s and Anger

Excerpted with Permission from the Duke Family Support Program
 
Risk Factors for Anger: Situational:
 
Too many competing responsibilities: work, children, marriage, church,
caregiving. A single caregiving task such as taking care of paperwork can require an
enormous amount of time and energy.
 
Difficult, unpleasant caregiving tasks: incontinence, brushing the person’s
teeth, giving instructions repeatedly, paper work, paying bills.
 
Little or no appreciation for efforts: “What are the reciprocity rules? She was
never there for me” “He expects three hot meals a day. He grew up on a farm where
they ate three big hot meals every day. He doesn’t understand – people don’t do that
today.”
 
Insufficient emotional or concrete support: “Even in the beginning stage
when I was so enraged and resentful, feeling all alone, not knowing what to do next,
I still knew there were logical, humane, and intelligent solutions to every problem I
faced with him. But I had to get beyond my rage and self-pity before I could see
them.”
 
Poor physical condition: pain, low energy, disabling conditions
 
Family conflict or questioning the diagnosis, what and how care should
be given: “Over the past year I have visited my sister and dad regularly. I just didn’t
see the problems my sister complained about. I thought she was exaggerating
because she resented having to care for him. She insisted that I come for more than
a day or two on weekends so I planned to come for two weeks, giving up my
vacation time. Before the first week was even half over, I had to apologize to my
sister”.
 
Decreased personal time, loss of friends, and loss of hobbies. “While I
can’t afford it often enough, occasionally I make good provisions for him and I get
away for a few days. I know I am a good care provider and he possibly feels more
secure with me – but I know to maintain my sanity I have to completely remove
myself from the situation. I don’t worry about him while I am away, and I don’t feel
guilty about leaving him”
 
Risk Factors for Anger: Attitudinal:
 
Unrealistic expectations: assumed standards set by self, family, friends, society
 
Inability to see positive change: “No light at the end of the tunnel.” “The glass is
always half empty”
 
Few perceived successes: The dependent person gets worse no matter how
excellent the care.
 
Ineffective caregiving or coping skills: arguing, scolding, becoming impatient
– “I wish someone had told me. I was always yelling at him, trying to get him to do it
right.”
 
Feeling life is unfair: “Ask and you shall receive. Why didn’t it work? Prayers,
once food for the soul, now feel strange to me. Each time a prayerful thought occurs,
my mind is triggered. Why weren’t my prayers answered? Why? Why? Why?”
 
Perceived ideas of who and what we should be: “Nice young ladies don’t get
angry.” “People with class control their emotions.” “Real men don’t cry.”
 
“Nobody can do it but me” syndrome: “We take care of our own.” “Mom took
care of me, now it’s my turn to take care of her.” “I don’t want the deacons at the
church to see him like this.” “I don’t want strangers in the house.”
 
Risk Factors for Anger: Emotional:
 
Unresolved past issues with the care recipient: “Yes, he is my dad,
but this man abused me until I was twelve years old. So what if I am the only relative
he has left. So what if he doesn’t remember the awful part. I remember!”
 
Fear and uncertainty over the future: “What’s going to happen to him? What’s
going to happen to me!”
 
Feeling captive to an old promise: “Promise you’ll never put me in a nursing
home”
 
Feelings of isolation: “I would hold the postman for thirty minutes because I had
no one to talk to.”
 
Flash Points: Anger Triggers
 
Shadowing: following the caregiver to the bathroom; picking up the phone
extension to listen in
Repetition: Asking the same question repeatedly; rocking, folding, pacing
 
Family criticism of caregiving
 
Feeling overwhelmed: depression and grief can fuel feelings of being
overwhelmed or defeated by care demands
 
Extreme fatigue: This may signal that the process of caregiver burnout has
begun and may leave you more prone to angry outbursts. You may also find it
difficult to think and act clearly. Your anger may be due to one of the following:
• Lack of sleep
• Poor nutrition depletes reserves needed to cope with stress, and limits
recuperative capacity
• Lack of exercise outlets
• Abuse of caffeine, alcohol, tranquillizers or tobacco products
 

Circuit Breakers:

Eight Tips on Maintaining Control

Excerpted with Permission from the Duke Family Support Program
 
Losing one’s temper, “flying off the handle,” “hitting the ceiling” all suggest a strong,
physical reaction to a person, event, and problem that causes displeasure or discontent.
The action is often immediate and without consideration about the validity of the feeling
or action. Taking proactive steps to contain anger means having ways to respond
appropriately.
 
Ask These Questions:
 
• “Do I really need to do, be concerned with, think about, or worry about this?”
• “What are the consequences if I ignore this?”
• “Am I the only person who can do this?”
• “Is this something that must be done now?”
• “Why am I doing this? Habit? Tradition? Someone else’s expectation? Guilt?
Comfort? Fear of reprisal or objection from the patient?
 
Use Conscious Messages to Maintain Control
Begin a positive inner dialogue: “I will not lose control. I have done this before; I can do it
again.” “Whenever I get angry, I just tell myself to ‘put it in neutral.’ That seems to be
enough to calm me down.”
 
Know What Defuses the Situation
Soothing talk, music, favorite foods or activity, going for a walk or a drive in the car,
allowing the person to pace in a secure area, removing the person from a cluttered or
overly stimulating environment.
 
Work at Accepting with Grace Painful Situations that You Cannot Change.
“When I first learned that my husband didn’t recognize me, I was furious, just consumed
with disbelief. How could he not know me! Then, something happened to change my
whole outlook entirely. I had always kissed him on the cheek when he came down for
breakfast. I continued to do this but it was killing me. One morning, I asked, ‘What would
your wife say if she knew I was kissing you?’ to which he replied, ‘I don’t know, but if you
don’t tell her, I won’t.’ Suddenly, I was able to laugh about the situation. Now, we both
laugh about ‘our secret.’”
 
Use “Good-Enough-for-Now Solutions”
Striving for perfection sets you up for failure. Find ways to pare down your workload and
caregiving tasks. Use jogging suits and slip on shoes, for example, if dressing becomes
a setting for catastrophic anger when the patient has trouble accepting help. On the
other hand, a retired science teacher came to Adult Day Care each day perfectly coiffed
and well dressed. It fit her image of who she was and it fit the family’s notion of their
commitment to her. Make those areas in your life where less becomes more, more
important in your daily life.
 
Use Specific Care Techniques or Responses to Specific Behaviors
Bathing, for example, frequently induces anger or resistance in the person with
Alzheimer’s. There are many reasons for the reaction; there are also many strategies for
making the task less objectionable. Learning which techniques work with the individual
cuts dramatically angry outbursts.
 
Turn Anger into Laughter
When the individual brings the garbage back into the house, it is easy to get mad.
Sharing incidents like these in support groups helps one find the humor and takes the
sting of anger out.
 
Lower your Standards and Expectations of the Impaired Person and
Yourself
“I quickly learned that it’s a waste of time and energy to feel guilty over yesterday’s
pileups – you’ve got to start with today’s and plan for tomorrow.”
 
Be Aware of Those Things that Spur Anger in You
For example, shadowing, repetition, family criticism, physical limit, a neighbor that is the
picture of health, holidays with good cheer messages, or feeling overwhelmed, extreme
fatigue or loss.
 
When You Don’t Know Why You Are Angry
“I was standing the kitchen and suddenly found myself jabbing the counter over and over
with a carving fork. How could I do that? Those counters were the pride of an earlier
kitchen renovation. I have no idea what prompted that kind of loss of control. Strangely,
afterwards I felt better and didn’t regret the ruined counter, even today.” Most often,
however, out-of-control behavior leads to regret or shame.
 
Know When to Give in to the Situation
“When the north wind blows, there is nothing to do but put on your overcoat!” This New
England adage is good advice for withstanding the icy blasts of Alzheimer’s – a force
that we cannot control. However, we are not helpless. We win when we decide to give
up the need to always be in charge, when we learn to accept with magnanimity those
things we don’t like or want in our life. We win when we accept the unreasonable, the
bizarre, the funny, the sometimes “crazy behavior” of the individual without becoming
angry or upset.
 
Pressure Points: Alzheimer’s and Anger, by Edna L. Ballard, MSW, ACSW, Lisa P.
Gwyther, MSW, LCSW, and T. Patrick Toal, MSW is available from: Duke Family
Support Program, Box 3600, Duke University Medical Center, Durham, North Carolina
27710 (919) 660-7510
 

Care Partner Burnout

Adapted from: Blandin K and Santulli RB:
The Emotional Journey of the Alzheimer’s Family
Lebanon, NH: University Press of New England, 2015
 
The end-point of unrelenting care partner stress is care partner burnout. Care partner
burnout has occurred when the care partner can no longer cope with the demands and
stresses of the situation, and there is an immediate need to rescue the person with
dementia - and the care partner - from a situation that has become untenable, and
potentially dangerous. Care partner neglect may be a sign that burnout will follow
shortly, or it may have already occurred. Significant abuse by the care partner almost
always indicates that burnout has taken place.
 
When a care partner has “burned out”, he or she may be simply unable to continue,
although because of the significant stigma associated with giving up the care partner
role, may be unwilling to acknowledge that this point has been reached, or may feel that
it is necessary to continue, no matter what, since no other options seem available. In
fact, a burned out care partner will often insist on continuing as a care partner, despite
ample evidence that he or she is no longer able to perform the tasks adequately. Other
family members or friends may recognize that something is seriously wrong more
readily than the care partner does.
 
Signs of care partner burnout are often associated with significant care partner
depression. Some burned out care partners will, as noted above, become neglectful or
even abusive. Sometimes the family care partner seems to lose the ability to feel
concerned about the wellbeing of the person with the disease, even though they
certainly cared deeply before. This is a serious sign that burnout has taken place, and
others now need to step in, quickly, to assume the providing care role.
 
Other indications that burnout has occurred can appear in the person with dementia.
He or she may be more disheveled or unclean, may appear underfed, and is often in
significant distress. The individual may seem frightened, angry, depressed, or anxious,
or may simply crave attention. While these could be indicators of some other stressors,
it is always wise to consider how the care partner is managing when one sees these
symptoms in someone with the disease.
 
Can a care partner who has reached the stage of burnout return to providing care, once
relieved of the task for a period of time? If no changes occur, other than being freed of
providing care for a number of days, weeks, or even months, it is likely that the
previously burned out care partner should not return to the task. What happened
before will likely happen once again, unless there are major changes in the caregiving
situation. Typically, this means that much more assistance from other family members
or paid care assistants will be necessary – not just temporarily but permanently. One of
the dangers is that other family members may feel that all is well now that they have
been taking a more active role, and that they are able to turn all control back to the
original care partner. An equal or greater risk is that the burned out care partner will
feel able to resume the task now that a period of rest from giving care has occurred.
Sometimes, when a care partner has reached the point of burnout, placement in a longterm
care facility will need to take place. This is often because there are no other
options for the person with the disease: for example, no other relatives are able or
willing to assume the care role. If others had been available (and willing) in the first
place, the situation might not have deteriorated to this point; one of the chief causes of
burnout is not having any, or enough, help with the tasks of providing care.
 
Another related factor that can lead to burnout is the care partner who too rigidly feels
that he or she must do the job completely, without help. Even if other family members
are available and very willing to help, some care partners find it hard or impossible to
accept assistance. Many – especially spouses – feel this way; or perhaps the care
partner feels that no one else will do the job “properly”. The costs of this attitude can be
enormous.