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 under appreciated, 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 self exploration 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
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.