Dementia Special: Delirium, Alzheimer's, Dementia Care, and Supporting CaregiversPage 49 of 51

4. Helping Caregivers Help Themselves

Restrictions on resources may influence an agency’s response to caregiver needs, but much depends on how we view caregivers in general. Are family members seen merely as a resource, or as people with needs and rights of  their own?

FCA, 2006

Knowing how to provide care correctly to their care recipients helps caregivers feel less stressed. They are less likely to injure themselves when doing things such as lifting or moving someone, and knowing how to accomplish tasks efficiently and where to find help can save time. But caregivers also need to provide themselves with direct attention to their own mental, emotional, and physical well-being (managing stress); getting enough sleep, eating properly, and exercising; seeing their own healthcare providers for routine care and tests; and taking breaks from caregiving (respite care).

The Role of Caregiver Assessments

In 2006 the Family Caregiver Alliance’s National Center on Caregiving published Caregivers Count Too!: A Toolkit to Help Practitioners Assess the Needs of Family Caregivers, which was the result of a consensus conference convened the year before. The toolkit is intended first, to sharpen the awareness of healthcare and social service providers about caregivers as an at-risk population with its own need for assessment; and, second, to help equip providers to develop and implement a caregiver assessment process appropriate to their practice (FCA, 2006).

Caregiver Assessment is a systematic process of gathering information that describes a caregiving situation and identifies the particular problems, needs, resources, and strengths of the family caregiver. It approaches issues from the caregiver’s perspective and culture, focuses on what assistance the caregiver may need and the outcomes the family member wants for support, and seeks to maintain the caregiver’s own health and well-being (FCA, 2006, 2014).

Reasons to conduct an assessment are that it:

  • Builds caregiver morale and capacity: caregivers feel acknowledged, valued, and better understood; gain a better grasp of their role and what is required; and can identify whether strains are becoming too great
  • Is the key to care planning: it is to know what is needed, what hasn’t been dealt with,  and where strain and health risks are at play; caregiver well-being can be key to a recipient staying in the community and not being institutionalized
  • Opens doors for caregiver and care recipient: can establish eligibility for services and facilitate timely referrals
  • Is a way to monitor program effectiveness and inform policy

While practitioner concerns about time and workload are legitimate, the toolkit makes a strong case that assessments will ultimately save time and resources and lead to better patient and caregiver outcomes (FCA, 2006).

In brief, any assessment should:

  • Identify the primary caregiver and other family and friends who are involved in arranging, coordinating or providing care
  • Approach issues from the caregiver’s perspective
  • Improve caregivers’ understanding of their role and what they need to know to carry out tasks
  • Give practitioners information to develop a care plan with measurable outcomes for caregivers
  • Address services available for the caregiver and provide appropriate and timely referral for services
  • Be no longer than necessary (FCA, 2006)

Assessments need to be tailored to your practice and the circumstances of patients and caregivers, but the toolkit provides detailed guidance for how to get there and how to focus on being practical, research-based, simple and direct, and systematic.

Mental Health and Emotional Support

Managing Stress

Stress is a serious and common issue for family caregivers and it can affect mental and physical health. You may see evidence of stress in your clients’ behavior or they may self-identify with some or many of the signs of stress.

The lists that follow is a blending of the Mayo Clinic webpage, Caregiver Stress: Tips for Taking Care of Yourself, and the Alzheimer’s Association caregiver stress pages, but they are very similar to lists that appear in many other places. Most discuss signs and specific support suggestions in some depth and may suggest practical manageable activities and goals, readings, videos, exercises, and support group options.

Healthcare providers will find there are many tip and support websites to choose from (see Resources) and, as with the earlier discussion of online resources, choosing key resources for your clients can help them focus on what is most important.

Psychologists and related practitioners may find the American Psychological Association’s (APA) Caregiver Briefcase to be a useful resource.

Risks for Caregiver Stress

  • Being female (but don’t forget about the men)
  • Having fewer years of formal education
  • Living with the person you are caring for
  • Social isolation
  • Having depression
  • Being in financial difficulties
  • Higher number of hours spent caregiving
  • Lack of coping skills and difficulty solving problems
  • Lack of choice in being a caregiver (Mayo Clinic, 2018)

Signs of Caregiver Stress

  • Feeling overwhelmed or constantly worried
  • Feeling tired often
  • Getting too much sleep or not enough sleep
  • Gaining or losing weight
  • Becoming easily irritated or angry
  • Losing interest in activities you used to enjoy
  • Feeling sad
  • Having frequent headaches, bodily pain, or other physical problems
  • Abusing alcohol or drugs, including prescription medications (Mayo Clinic, 2018)

The Alzheimer’s Association’s 10 Symptoms of Caregiver Stress provide a focus especially in tune with issues around care of a person with dementia.

  • Denial
  • Anger
  • Social withdrawal
  • Anxiety
  • Depression
  • Exhaustion
  • Sleeplessness
  • Irritability
  • Lack of concentration
  • Health problems (AlzA, 2019a)

Dealing with Caregiver Stress

  • Prepare for what is ahead by getting information and making care, legal, and financial plans ahead of time
  • Ask for/accept help
  • Focus on what you are able to provide/learn or update caregiving skills
  • Set realistic goals
  • Get connected
  • Join a support group/talk to someone
  • Seek social support/make use of community resources
  • Set personal health goals/include regular exercise and relaxation techniques/get enough sleep (See Mayo Clinic, 2017 for more on relaxation techniques)
  • See your doctor/take care of yourself
  • Take advantage of respite care (AlzA, 2019a; Mayo Clinic, 2018; Robinson et al., 2019)

Respite Care or Taking a Break

Respite care is temporary care provided in a nursing home, hospice inpatient facility, or hospital so that a family member or friend who is the patient’s caregiver can rest or take some time off. It can also encompass in-home respite care where home health aides come in to provide care normally handled by the family caregiver and adult care centers and programs (adult daycare).

Caregivers who are employed outside the home and are covered by the federal Family and Medical Leave Act may be eligible to use up to 12 weeks leave per year to care for a relative. This may be a good solution for a caregiver feeling particularly overwhelmed by caregiving responsibilities.

Programs of All-Inclusive Care for Elders (PACE)

Healthcare providers should be familiar with Programs of All-Inclusive Care for the Elderly (PACE) (Medicare & Medicaid) if they practice in the 31 states that offer it under Medicaid, making it available as well for those on Medicare who qualify (, n.d.). Under PACE, a doctor may write a “prescription” for respite care that will be honored by Medicare. Among the many services are “social services, including caregiver training, support groups, and respite care.”

Support Programs (Interventions)

The CDC, in collaboration with others, has developed the Action Guide for using REACH OUT, which is one of several evidence-based caregiver support system designed to promote the health and well-being of adults caring for person with dementia. While the guide is oriented toward those wanting to establish a program in their facility or community, the information provided can help any healthcare professional understand research fundamentals, elements of the problem, parts of a program and how it can work, and fundamental benefits. Information gained can be used to inform individual work with clients or if contemplating implementing a program.