Introduction

Caregivers may seek services from psychologists directly for assistance with caregiving related challenges or burdens. Many caregivers, however, do not recognize that their caregiving role is one for which they can seek services.

Psychologists may need to open themselves to noticing caregivers’ needs in settings where psychological services are provided, and may need to reach out to offer services relevant to caregiving concerns. In other words, traditional referral patterns for services often do not apply for several reasons.

  • Caregivers frequently do not identify themselves as caregivers. They instead believe that they are simply functioning as a loved one should.
  • They are often so focused on taking care of others that they do not consider seeking help for themselves, even when they are distressed.
  • They typically believe that they do not have the time to meet with psychologists or seek other forms of help for themselves because they cannot leave the care recipient unattended
  • They may feel embarrassed if they experience a sense of burden or distress because they believe that having such negative emotions means they are not good caregivers.
  • They worry that, if they should need to seek help for themselves, others will criticize them for being unable to adequately care for their loved one.

Settings where caregivers are found:

  • Community Organizations (e.g., schools, churches, barbershops)
  • Healthcare Centers and Hospitals
  • Social Service Agencies
  • Non-profit, Disease-specific Organizations
  • Housing
  • Self-referral
Community Organizations

Some family caregivers may be especially reluctant to find or make use of caregiver support services through mainstream healthcare and social service agencies because of past experiences of access barriers or stigma.

Caregiver support services may more effectively reach caregivers if those services are integrated within organizations where the targeted population is already seeking services, such as:

  • Racial and ethnic minorities, especially those who do not speak English
  • Sexual minorities who may encounter legal barriers to caregiving
  • Poor persons
  • Persons who do not speak English as their primary language
  • Persons living in rural, inner city or other areas where transportation is limited or cumbersome.

Psychologists wishing to provide services to members of these groups will often need to make outreach efforts through community organizations and contacts trusted by these family caregivers. Models for how to reach caregivers in some marginalized groups may come from public health efforts such as vaccination campaigns.

Caregiver support services may more effectively reach caregivers if those services are integrated within organizations such as:

  • Community health centers, low-fee clinics, U.S. Department of Veterans Affairs (VA) clinics and the Military Health System/TRICARE medical centers
  • LGBT service centers
  • Churches whose members include under-represented groups
  • Community-based recreational and social centers

Vignette 1

Concerned womanJuanita Garcia accompanied her friend and long-time housemate Josephina Mondragon for her last 3 medical visits at the community health center. When the receptionist learns that Juanita views herself as Josephina’s caregiver, she follows the clinic’s caregiver protocol. She asks Juanita to complete a brief screening instrument for caregiver stress, quickly scores it, and then puts the results in Josephina’s chart. As a consequence, Josephina’s physician asks her for the first time if she wants Juanita to come into the exam room. Josephina expresses relief that Juanita can join them so that she will not have to try to remember everything that happens during the medical visit. Once in the exam room, the physician examines Josephina and addresses all her concerns, but he also solicits questions from Juanita about the new medication and dietary regimens he’d recently prescribed. The physician then invites Juanita to remain briefly in the exam room while the nurse brings Josephina back to the lobby. When the physician asks Juanita how well she is coping with caregiver stress, her sudden tears speak volumes. The physician then schedules a separate appointment for Juanita to more thoroughly evaluate her well-being and to provide informational brochures on community-based caregiver support services, including caregiver counseling through the local Area Agency on Aging.

Vignette 2

John and Georgina Johnson welcome a visit from the outreach worker at their neighborhood community center where their grandson, Anjiah, is a regular. They want to talk about the challenges of parenting Anjiah whom they say is a “handful”, exhausting their energy and financial resources. The outreach worker helps John and Georgina identify community-based support services for themselves including respite care options, and she also arranges for Anjiah to begin meeting with a Big Brother.

Vignette 3

The parish nurse from the local Catholic church visits all families with newborns to assess parenting stress as well as newborn well-being. When she visits Jason’s parents, she learns that they are struggling to understand what the meaning of his Down’s syndrome will be for their family. His mother and father acknowledge that they are fearful about the future, exhausted from addressing their family members’ concerns, and depressed that the expectations they’d had for Jason before he was born will never be realized. The nurse helps the family identify local resources for counseling, parent education about Down’s syndrome, and early intervention services. Although the parents take advantage of only the parent education classes, they find that, over time, they are able to revise their expectations and begin to appreciate the daily joys of parenting Jason.

Healthcare Settings and Hospitals

Psychologists working with persons experiencing illness or disability often have incidental contact with family members or they may seek out family more deliberately in order to engage them in the treatment process. Caregivers are rarely invited to be explicit members of the healthcare team. But these family members play roles that are critical to the care of the patient.

Psychologists can:

  • Support family members’ well-being during stressful times
  • Treat the negative mental health effects of long-term caregiving
  • Help families to provide more effective care of their loved ones.

In what settings might you encounter caregivers?

  • Primary Care
  • Specialty health clinics (e.g., cancer, dementia, diabetes, transplant)
  • Hospital discharge planning sites
  • Mental health clinics

Vignette 1

When Mrs. Jones visits her family physician for her annual physical exam, she is found to have elevated blood pressure for the first time in her life. The physician speaks with her about recent stressors that might be affecting her emotionally and physically. He then refers her to you for a psychological assessment of how caring for her husband with Parkinson’s disease has been affecting her. Mrs. Jones arrives at your office with a look of apprehension. She answers your questions politely but guardedly. She is clearly uncomfortable seeing a psychologist and fears that you’ll tell her that there is something wrong with her and that she isn’t taking proper care of her husband. However, when you listen to and support the fine job she is doing, empathetically offer some education about the risks of caregiving and reframe her taking care of herself as a way of helping her husband, Mrs. Jones visibly relaxes. You suggest she consider taking a yoga class or a daily walk and you offer advice about respite services. You also invite her to come back to talk if she would like support working through some of the challenges of providing daily care.

Vignette 2

As Worried manpart of Mr. Grover’s participation in his 5-year-old son’s comprehensive team-based services for Asperger’s disorder, he meets with you for psychoeducation about the disorder and behavioral strategies for managing his son’s frequent tantrums at home. During his meeting with you, Mr. Grover confesses that he knows that he should be more understanding of his son’s behavioral problems but that he loses his temper frequently. He also says that he worries so much about his son’s future that he has trouble sleeping at night and that he and his wife have been fighting a lot over care of their son You offer him the opportunity to talk further about these concerns in a follow-up psychotherapy session and you make him a relaxation tape to help him get to sleep. He agrees to come to further therapy sessions, including a joint session for him and his wife.

Social Services Settings

As part of their involvement with persons with illnesses or disabilities, case workers from social service agencies often encounter family caregivers who are in distress or have mental health disorders. These problems make it more difficult for caregivers to provide optimal care to their loved ones or make effective use of the available social services and resources. Psychologists frequently serve as important partners for these agencies in aiding individual clients and their relatives.

Psychologists can:

  • Assess the capacity of individuals and family members for decision-making.
  • Assess and treat mental disorders that interfere with the effective use of social services.
  • Consult with social service agencies on conflicts that occur within families or between families and agency staff members.

Vignette 1

DiscussionYou receive a phone call from the geriatric assessment program social worker in your healthcare system asking you to meet with the three adult children of a 70-year-old man who recently underwent a geriatric assessment. The social worker tells you that the children have been arguing vehemently with one another about the extent of their father’s cognitive decline. They also cannot agree about his need for intensive (and expensive) support services. She would like you to mediate some common understanding among them and then help them to develop a concerted plan of action for their father. You ask her to obtain permission to send you the report on the man’s condition and then have the children call you for an appointment.

Non-profit, Disease-focused Organizations

Organizations like the National Alliance on Mental Illness or the Alzheimer’s Association have as part of their mission the provision of information and support for individuals with specific diseases and for their caregivers.

These organizations:

  • Know well the particular symptoms, course variations, and impact of the disease
  • Are a natural focus for caregivers to find information about the disease, its treatment, self-care, and related resources

Man looking out windowPsychologists can develop a working relationship with these organizations by participating in their community outreach and educational offerings as presenters. After gaining the trust of such organizations through such volunteer activities, psychologists may also become trusted clinicians for referrals of individuals needing additional health and behavioral services such as assessment, individual and/or family therapy, and/or psychoeducational programs.

Housing/Residential Care

Psychologists frequently provide services in residential care settings for older adults or persons with disabilities or serious mental illness who are living in residential care facilities, including:

  • Nursing homes and rehabilitation centers
  • Assisted living facilities
  • Retirement communities
  • Group homes for persons with disabilities
  • Halfway houses
  • Multi-level housing campus
  • Foster or host homes

Referrals for psychological services may include requests for help with family members whose involvement in a facility has been disruptive to the residents or staff members. Psychologists may also be asked to lead facility-based family support or education groups for parents or siblings of individuals with developmental disorders or serious mental illness/severe emotional disorders (SMI/SED), or for children or adolescents providing care for their parents or other adult relatives.

Vignette 1

Concerned womanThe program director at a residential facility for severely developmentally disabled young adults calls you to request your help in dealing with the 70-year-old mother of one of the facility’s residents. He tells you that the mother frequently lambasts his staff members for neglecting her son. She has sent multiple letters to the facility’s Board of Directors complaining about the quality of care. He would like you to meet with her to hear her complaints and to better understand if her largely ineffective way of interacting with the staff can be improved. You agree to meet with the mother at the facility in order to better understand her concerns and to evaluate whether the intensity of her complaints are at all related to depression, anxiety, or other treatable conditions or if your mediating her interactions with the staff might be helpful.

Self-referral

Psychologists working with any population of assessment or psychotherapy clients are likely to encounter family caregivers. Caregiver burden or distress may or may not be part of the presenting clinical problem. Keep your eyes open for stress-inducing care demands in the lives of people for whom you are providing psychological care.

Vignette 1

Ms. Rowan sends you an email stating that she read an article in the newspaper that you wrote about family caregiver stress and that she’d like to make an appointment to meet with you. When you call her, she tells you that she has been taking care of her 80-year-old mother with dementia in her home for the past two years and that she is “at the end of [her] rope.” During the first visit, she describes tearfully how she finds herself hating her mother for disrupting her life. She also says that her mother is a recovering alcoholic who was a poor parent. Ms. Rowan asks for ongoing psychotherapy to help her deal with her old and new feelings about her mother so that she can be a good, not resentful, caregiver.

Vignette 2

Worried manIn your treatment of John L. for depression, you learn that he feels trapped by his responsibilities to his widower father. The father lives with, and takes care of, John’s  chronically mentally ill uncle. Your problem-solving work with John leads him to decide to help his father move into senior housing, but he is uncertain about how to nudge his father in this direction or what housing options exist for him. John also has to consider options for transitioning his uncle from the father’s oversight into other care systems or into greater independence. Dealing with the challenges of caregiving is suddenly central to your psychotherapeutic work with John.