The Emotional Rollercoaster of Caregiving: How to glide through the highs and lows you and your loved one experienceLee Phillips, EdD ABD, MSW, LCSW, CSAC

Objectives for this Course• Learn about Family Stress and Adaptation Caregiving is Stressful The Amount of Demands on the Family Are Unprecedented Many Different People Become CaregiversCaregiving Stress Is a Multidimensional ProcessSocial Support and Coping Buffer Caregivers against StressorsCaregiving Affects Other Family Relationship DynamicsCaregiving Involves Continuity of Change Placement Is Not Always the Answer for Caregiving StressImplications for Treatment

Objectives for this Course

• Learn about Dementia and Family Caregiving: Treatment Approaches

Transitions into CaregivingCaregiving in the Community : A Comprehensive

Treatment to Reduce Stress Assessing Caregivers Treatment Techniques: Problem Solving, Providing Support, Counseling/ Psychotherapy, Family

Meetings , Support Groups, Promoting Self-Care for the Caregiver

Caregiving Is Stressful

• Care of a disabled older person is very stressful especially when the person suffers from Alzheimer's disease or another dementing disorder.

• Research has documented the negative effects that caregiving has on health and well-being of families.

• Caregivers are more likely to be depressed and angry and possibly also to have poorer health than age-matched controls who are not involved in caregiving.

• Perhaps the most dramatic evidence of the toll that caregiving takes is the fact that caregivers who experience strain in their roles have higher rates of mortality than age-matched controls who are not caregivers.

The Amount of Demands on the Family Are Unprecedented

• Although families have provided care for their disabled loved ones, the convergence of several trends has resulted in dramatic changes in the conditions and context of caregiving that have made it potentially very stressful.

• First and foremost, caring for an elder person used to be a rare event in a family’s life, because most people did not survive to old age.

• Second, the period of time that people live with the disabilities at the end of their lives has increased .

• As a result, families care for older relatives for longer period of time , and the disabilities their family have are more severe now than they were in the past Ex. Patients with Dementia are now living longer!

The Amount of Demands on the Family Are Unprecedented

• While demands placed on families have been increasing, their resources for providing care have shrunk.• Family size is smaller, so the burden of care falls on

fewer people. • The sum of these trends, then, is that more people

require more extensive assistance for longer periods of time than ever before, whereas the family’s resources for providing help are often limited.

Many Different People Become Caregivers• The media image of a caretaker is a daughter who is

balancing care of a parent, work, and her own family responsibilities. This does occur , but research shows us that most likely the person to take on caregiving responsibilities is a husband or a wife. • Husbands, in fact, become caregivers almost frequently

as wives do. • Children get involved in a secondary way when both

parents are alive or as primary caregivers when a parent is single or widowed. • When an older person has no children, sometimes

other relatives get involved as well as friends.

Many Different People Become Caregivers• IMPORTANT! Understanding the meaning of the caregiver’s

commitment is sometimes the key to helping that person make changes in the situation.

• Husbands often take on responsibilities as if it were a job. They see their role as performing instrumental tasks and take satisfaction from doing so.

• The biggest challenge husbands face are mastering household routines and getting support from children and other family members. Example: Domineering role in family system.

• Wives, by comparison may be affected emotionally by their husband’s illness. They will feel depressed, but also resentful and angry that this burden has been placed on them.

Caregiving Stress is a Multidimensional Process• The stress of caregiving can be best understood as a

multidimensional process. No single measure of stress can capture the impact on caregivers. • The changes in an older person’s health and functioning

set off a chain reaction that affects families in many different areas- financially and emotionally, as well as in how they carry out other roles and responsibilities. • IMPORTANT! How stress plays out depends on the

characteristics of the older person’s condition, as well as the family’s own resources in responding.

Caregiving Stress is a Multidimensional Process• Pearlin and Associates Stress Process Model of

Caregiving is useful in understanding caregiving stress and identifying helpful interventions .• Primary stressors: The amount of care needed for daily

activities and any behavioral, cognitive, and emotional disturbances that caregivers must cope with .

• Another primary stressor is the caregiver’s growing sense of loss of the relationship with the person.

• The impact of those problems on caregivers varies considerably. • Some caregivers find dealing with their relative’s incontinence

to be overwhelming , whereas others view it as just one more task to manage. SOME TAKE PRIDE AND JOY IN IT!

Caregiving Stress is a Multidimensional Process• The demands placed on caregivers in dealing with primary

stressors can spill over into other areas of the caregiver’s life leading to what Pearlin and colleagues call secondary stressors. • Secondary Stressors: Caregivers may find themselves pressured in

dealing with spouses or children. They may experience conflict with other family on how they are providing care.

• The time demands may interfere with their work roles and with other leisure activities.

• This spill over may have psychological consequences, leading to what Skaff and Pearlin call this “loss of self”, in which the caregiver becomes absorbed in the caregiving role.

• IMPORTANT! Rather than assuming that caregiving places strain, it is essential to note that some caregivers who are employed outside the home actually report their work gives them a break from their caregiving responsibilities.

Social Support and Coping Buffer Caregivers against Stressors• Caregivers respond differently to similar events or

stressors. • Two main factors have emerged from the literature that

appear to protect caregivers from the stressors in their role: Social Support and Coping.

• Social Support: Community Agencies (CSB, DSS, Home Health Care Agencies)

• Coping: Some caregivers do a very good job in managing disruptive behaviors, calming the patient down, or distracting him or her.

• By contrast, other caregivers respond to the same behaviors in confrontational or controlling ways that actually increase the patient’s agitation or disruptiveness.

Social Support and Coping Buffer Caregivers against Stressors• Share Example • The point here is that some resources, particularly

support and coping , are protective against the stresses in caregiving. • These resources are potentially modifiable; that is, we

can do things that increase support available to caregivers and to help them use more adaptive strategies for managing stressors. • Addressing these modifiable aspects of the stress

process can lead to better outcomes for the caregivers.

Caregiving Affects Other Family Relationship Dynamics• Beyond issues of family support and conflict, caregiving

can awaken or intensify relationships issues within the family. • The altruistic motivation to help can become enmeshed

with unresolved feelings about the caregiver or other family members. • Share examples

Caregiving Involves Continuity and Change • Both continuity and change characterize the caregiving

role. • For many families, caregiving stretches over a period of

several years. • It is not uncommon for families to care for someone

with dementia at home for a period of 10 years or more.• During this sustained effort, stressors emerge and

recede in importance. • Some caregivers do well despite fluctuations in

stressors, and others may wear down. Still others may make adaptations that improve their situation.

Caregiving Involves Continuity and Change • Part of our commitment as clinicians when working

with caregivers is to meet them where they are and be there for them when their situation changes• As clinicians, we have seen caregivers on and off

throughout the whole course of their relatives’ illness and even beyond, as they cope with bereavement.

Placement Is Not Always the Answer for Caregiving Stress• Because caregiving is so stressful for many families,

shouldn’t clinicians encourage placement in a care facility outside the home? • Many of us have; however, emotional, practical, and

financial considerations may make institutional placement a complicated decision. • Emotional• Practical • Financial

Implications for Treatment

• Family care is complex, ongoing process characterized both by considerable individual differences and by key transitions such as nursing home placement that require families. • There are no simple formulas for understanding

caregiving nor simple stages that reduce it to an uncomplicated pattern. • Research on caregiving provides a framework for

viewing the broad phenomenon, for conducting assessments to identify the particular strengths and problems within a given family, and for pinpointing potentially modifiable features of the stress process.

Transitions into Caregiving

• Meeting families first in the earliest stages of care creates opportunities for interventions that can prevent problems later on. • These interventions can involve the patient with

dementia, mental health, or medical issues of concern or how caregivers structure the situation so that they do not become overwhelmed at a later point. • Share clinical examples on the transitions into

caregiving.

Caregiving in the Community: A Comprehensive Treatment to Reduce Stress• Assessing Caregivers: The initial assessment is used to

identify the primary caregiver, to determine the main problems the elder is experiencing and their impact on the caregiver, and to set some preliminary goals. • Caregivers may seek treatment for themselves , but the

most typical situation is bringing their relatives for an assessment. • Many elderly clients are fully competent to provide

information and make decisions themselves. In those cases, it can be determined whether or not the older person perceives a problem or wants treatment.

Caregiving in the Community: A Comprehensive Treatment to Reduce Stress• Depending on the presenting problem, the focus may

just be on the older client or on the dyad of client and caregiver.• In other situations, it can quickly be determined that

the client has a limited ability to provide information or participate in treatment. In those cases, the focus shifts on the caregiver. • Even when the older persons cannot report information

accurately, however, it is critical to treat them with respect and give them time to tell their stories.

Caregiving in the Community: A Comprehensive Treatment to Reduce Stress• Assessment Process:• Onset and course of symptoms (Duration and Frequency)• Physician’s Diagnosis • Past and Current Treatments and their Effects• Other Medical Problem and Medications • Assess the family’s understanding of the patient’s illness,

symptoms, treatment, and prognosis• Assess in identifying what features of the situation are stressful

to the caregiver• In the cases of dementia, the caregiver may find it difficult to

manage cognitive and behavioral symptoms.• Share Colonial Behavioral Health’s assessment process • Assess 10 symptoms of caregiver stress!

Assessing Caregivers: Ten Symptoms of Stress• Denial about the disease and its effect on the person

who has been diagnosed. Ex. I know Mom is going to get better.• Anger at the person with Alzheimer's, anger that no

cure exists or anger that people don't understand what's happening. Ex. If he asks me that one more time I'll scream!• Social withdrawal from friends and activities that once

brought pleasure. Ex. I don't care about getting together with the neighbors anymore.• Anxiety about the future. Ex. What happens when he

needs more than I can provide.

Assessing Caregivers: Ten Symptoms of Stress• Depression that begins to break your spirit and affects your

ability to cope. Ex. I don’t care anymore. • Exhaustion that makes it nearly impossible to complete

necessary daily tasks. Ex. I am too tired for this. • Sleeplessness caused by a never-ending list of concerns. Ex.

What if she wanders out of the house or falls and hurts herself?

• Irritability that leads to moodiness and triggers negative responses and actions. Ex. Leave me alone!

• Lack of concentration that makes it difficult to perform familiar tasks. Ex. I was so busy, I forgot we had an appointment.

• Health problems that begin to take a mental and physical toll. Ex. I can’t remember the last time I felt good.

Treatment Techniques: Problem Solving • The heart of intervention with family caregivers is

problem solving.• Clinicians can use problem solving to pinpoint times

when a caregiver feels especially stressed or emotionally drained and to identify the specific event or sequence of events that gives the caregiver trouble. • Solutions can include finding better ways to manage the

triggering events or getting relief for the caregiver before

Treatment Techniques: Problem Solving Process• Pinpoint a behavior and assess when it occurs and how

often.• Identify antecedents and consequences .• Identify possible strategies for intervention

(brainstorm).• Select a strategy (use pros and cons). • Plan and rehearse implementing the strategy. • Try out the strategy and evaluate it. • Share example

Treatment Techniques: Providing Support• Support emerges naturally from a therapeutic relationship

that is empathic and nonjudgmental. • A clinician’s support can help a caregiver explore difficult

issues and gain confidence to make changes. • Through therapy sessions, the caregiver can identify types

of support that would be helpful or that the caregiver would be willing to use.

• Accepting help from family and friends is difficult for many caregivers and some are reluctant because they feel they should be able to do it on their own.

• Caregivers may be concerned that help is not reliable and they may not want to use community support agencies. (Clinician may help with case management tasks)

Treatment Techniques: Providing Support: Psychotherapy• Cognitive -Behavioral Therapy treatment can be used to

identify and modify thoughts that lead to maladaptive behaviors and emotions.

• Caregivers and other clients can learn how their thought processes affect behaviors and emotions, as well as learning to identify the thoughts they are having that trigger emotions.

• Family Systems: Important! One of the biggest mistakes that a clinician can make is to assume that family members can easily get down to business to address a current problem in a rational and straightforward way.

• Family meetings look at patterns of interactions among family members and the roles that each person has within the family.

Treatment Techniques: Support Groups• Support groups have therapeutic processes that are not

found in individual counseling or family meetings. • Support groups can be used for information sharing,

problem solving, and support. • Groups provide a special kind of support that is not

available elsewhere, that of sharing experiences with people that are in the same situation.

• Caregivers feel less isolated after attending groups due to hearing how other caregivers respond to similar situations. They are able to normalize with one another.

• Groups help caregivers understand the strong emotions they feel are an expected part of the stress of caregiving, not something that is wrong with them.

Treatment Techniques: Self-Care for Caregivers• Self-care is essential for those who are caregivers! • Self-care can involve counseling, exercise, massage therapy and

other relaxation techniques.• Relaxation Techniques can include:• Visualization (mentally picturing a place or situation that is

peaceful and calm)• Meditation (which can be as simple as dedicating 15 minutes a day

to letting go of all stressful thoughts)• Breathing exercises (slowing your breathing and focusing on taking

deep breaths)• Progressive muscle relaxation (tightening and then relaxing each

muscle group, starting at one end of your body and working your way to the other end)

References:Aneshensel, C. S., Pearlin, L. I., Levy-Storms, L., & Schuler, R. H. (2000). The transition from home to nursing home mortality among people with dementia. Journal of Gerontology: Social Sciences, 55B(3), S152-S162.Cassel, C. K., Rudberg, M. A., & Olshanky, S. J. (1992). The price of success: Health care in an aging society. Health Affairs, 11, 87-89.Gallagher, D., Rose, J., Rivera, P. Lovett, S. & Tompson, L. W. (1989) Prevalence of depression in family caregivers. Gerontologist, 29, 449-456.Kiecolt-Glaser, J. K., Dura, J., R., Speicher, C. E., Trask, O. J., & Glaser, R. (1991). Spousal caregivers of dementia victims: Longitudinal changes in immunity and health. Psychosomatic Medicine, 53, 345-362.

References

MaloneBeach, E. E., Zarit, S. H. (1995). Dimensions of social support and social conflict as predictors of caregiver depression. International Psychogeriatrics, 7, 25-38. Miller, B. (1990). Gender differences in spouse caregiver strain: Socialization and role expectation. Journal of Marriage and the Family, 52, 311-321.Mittleman, M. A., Epstein, C., & Peirzchalla, A. (2002). Counseling the Alzheimer's caregiver: A resource for health care professionals. Chicago: American Medical Association.Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. Gerontologist, 30(5), 583-594.

References

Rosenthal, C., & Dawson, P. (1991). Wives of institutionalized elderly men: The first stage of the transition to quasi-widowhood. Journal of Aging and Health , 3, 315-334.Schulz, R., & Beach, S.R. (1999). Caregiving is a risk factor of mortality The caregiver health effects study. Journal of the American Medical Association, 282, 2215-2219.Schulz, R., O’Brien, A. T., Bookwala, J., & Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. Gerontologist, 35, 771-791.Stone, R., Cafferata, G. L., & Sangl, J. (1987). Caregivers of the frail elderly: A national profile. Gerontologist ,27, 616-626.

References

Skaff, M. M., & Pearlin, L. I. (1992). Caregiving: Role engulfment and the loss of self. Gerontologist, 32(5), 656-664.Toseland, R. W., Rossiter, C. M., Peak, T., & Smith, G. C. (1990). Comparative effectiveness of individual and group interventions to support family caregivers. Social Work , 35, 209-217.Vitalino, P. P., Persson, R., Kiyak, A., Saini, H., & Echeverria, D. (2005). Caregiving and gingival symptom reports: Psychophysiologic mediators. Psychosomatic Medicine, 67(6), 930-938.Vitalino, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous one’s physical health? A meta-analysis. Psychological Bulletin, 129(6), 946-972.

References

Whitlatch, C. J., Judge, K., Zarit, S. H., & Femia (in press). A dyadic intervention for family caregivers and care receivers in early stage dementia. Gerontologist. Zarit, S. H., & Zarit, J. M. (2007). Mental disorder in older adults (2nd ed.). New York, NY: The Guilford Press.

Helpful WebsitesAlzheimer’s Disease Education and Referral Center (ADEAR) of the National Institute on Agingwww.niapublications.org/adear/Alzheimer's Associationwww.alz.orgAssociation for Frontotemporal Dementiawww.ftd-picks.orgFamily Caregiver Alliancewww.caregiver.orgLewy Body Dementia Association www.lewybodydementia.orgNational Institute of Neurological Disorders and Strokewww.ninds.nih.gov/disorders/multi_infarct_dementia/multi_infarct_dementia.htm