Many caregivers are part of what's being called the sandwich generation, caring for their children and aging parents at the same time while maintaining their professional responsibilities. These caregivers may also be caring for their spouses, grandchildren, and other family members. This creates a situation in which there's little energy left for self-care, especially when caring for a parent with declining cognition.
Medical conditions that can contribute to cognitive decline include Alzheimer disease, stroke, depression, cardiopulmonary disease, and urinary tract infection (see Selected examples of why cognition declines). Although we tend to think of cognitive decline as affecting older adults, it can occur throughout all ages of the lifespan. For example, early onset Alzheimer disease may be diagnosed as young as age 40.
This article presents potential challenges that adult children encounter when a parent's cognition declines and coping strategies to help them during this difficult time in life.
Cognitive decline can cover a wide spectrum of symptoms and levels of cognition. Caring for a parent who's forgetful but wants to remain independent is a special challenge. The parent may struggle to maintain independence, attempting to continue the familiar role of caring for him- or herself and others, but sometimes this isn't possible. At the other end of the spectrum, the parent may have a radical personality change and become difficult to care for. Family members may have a hard time dealing with unrecognizable behavior. And the parent may be angry or frightened when he or she realizes that control is slipping away.
Declining cognition, especially when there's little to no physical decline, is a challenge for caregivers, often leading to caregiver strain, which can take a toll on the entire family. Risk factors for caregiver fatigue include:
- being female
- having an illness or chronic disease
- caring for a family member with dementia
- lack of coping skills
- difficulty solving problems
- lack of adequate resources
- refusal to ask for or accept help.
Providing education to the patient, the caregiver, and the family is an important step in maintaining a healthy lifestyle and a safe home environment (see Family education needs). Education should begin on admission to an acute care area and end with discharge instructions. Education should include nutrition, activities of daily living, medications, possible complications related to the diagnosis, and general safety in the home.
Tailoring education to patient and caregiver needs, and their unique situation, assists the entire family to work toward optimal quality of life. Providing patients and their families with as many options as possible can also minimize stress. Social workers and/or case managers are valuable resources who can offer information about community resources, such as respite care.
Respite care is temporary institutional care of a dependent older, ill, or handicapped family member that provides relief for the caregiver. Breaks from care can prevent caregivers from developing new physical and/or mental health problems so they can continue providing care for their parent and avoid problems such as neglect and abuse.
Helpful strategies for the caregiver to reduce caregiver strain include:
- Care for yourself first. You can't help a family member if you aren't well.
- Schedule time for yourself and take time off when possible without feeling guilty.
- Maintain proper sleep, nutrition, and regular physical activity.
- Learn and use stress-relieving techniques, such as yoga, meditation, exercise, and enjoyable hobbies.
- Seek and accept assistance from others, such as through support groups or respite care.
- Look into local services that can provide assistance, such as Area Agency on Aging, adult day care programs, and Meals on Wheels.
For every patient regardless of age, explain the importance of advance directives, living wills, and healthcare power of attorney. After cognition declines, legal papers can't be filled out and family members may not know the wishes/desires of their parents. Taking care of a parent can be time-consuming and difficult on a daily basis, but adding the care of the parent's finances can increase stress.
The healthcare power of attorney provides patients a method of choosing who can speak for them if they're unable. It doesn't include any information related to belongings, such as money, homes, or cars. The patient designates a primary person for decision making and a secondary in case the primary person isn't available.
Patients should discuss in detail what their wishes are related to healthcare with all family members, especially the primary and secondary individuals designated with power of attorney. Without previous knowledge of the patient's wishes, the person with power of attorney may experience anxiety, stress, and guilt when making decisions.
Jacqueline, 48, cares for a busy household and works a full-time job. Her husband, Wesley, has diabetes, hypertension, and end-stage renal disease. Wesley takes himself to dialysis three times a week when he feels healthy enough to drive. Jacqueline has a 19-year-old daughter and 2-year-old grandson living in the home.
Six months ago, Jacqueline's father passed away suddenly, leaving her 78-year-old mother, Jane, to live alone. During the last 6 months, Jacqueline has seen her mother's cognition rapidly decline. Physically, Jane can still walk without assistance and perform activities of daily living; mentally, she's become confused at times, anxious, and withdrawn. She's oriented to person but has confusion related to caring for herself, such as cooking, housework, and financial needs.
Jacqueline has had minimal contact in the past 10 years with her sister and brother who live in another city. She's contacted her siblings many times in the last 6 months requesting assistance with caring for their mother. The siblings have said that they're unavailable to help.
Jane is hospitalized for chest pain and shortness of breath. Physical possibilities are ruled out and she's diagnosed with anxiety and depression. Jacqueline meets with the hospital social worker for assistance who gives her information about long-term-care facilities and in-home sitters. Jacqueline quickly realizes that her options are limited due to financial constraints.
Jacqueline decides to move her mother in with her family. She now has a house that's bursting at the seams. She's juggling the care of her husband and her mother, along with a full-time job. Her 19-year-old takes care of herself and her grandson, but doesn't earn enough money to live on her own. Jacqueline also has the problem of deciding what to do with her mother's belongings. She quickly realizes that very little of her mother's furniture and belongings can be brought with her, and what there's room for makes the house even more cluttered, which may become a safety hazard for Jane.
With help from social workers and the nursing staff, Jacqueline obtains needed assistance. She connects with a community organization that will transport her husband to and from dialysis 3 days a week. She hires a sitter to stay with her mother when she isn't home during the day. Jacqueline also joins a role reversal support group, which is helping her cope with caregiver strain and stress by knowing that many families are in the same situation (see Support points of contact).
Be alert to signs of burnout
Caregivers frequently experience burnout. Caring for a parent who's experiencing cognitive decline presents many challenges, and the caregiver must find methods of self-care to prevent a decline in his or her own health. Make sure caregivers know that asking for help isn't a sign of weakness or shirking responsibility. Encourage caregivers to be alert for warning signs of personal stress, such as pain in the body, crying, exasperation, or depression, and to seek assistance from social workers, councilors, and family members if any of the warning signs are noted.
Family education needs
- Provide information regarding specialty diets, including protein, vitamins, minerals, and medication-related dietary needs. Instruct the caregiver to have easy-to-prepare nutritious food close at hand. Consider a dietitian consult.
- Encourage the patient to stay as active as possible. Assist with procuring needed appliances, such as walkers or canes. Encourage low-impact, weight-bearing exercise as tolerated. Consider a physical therapist consult.
- Give the patient and caregiver written and verbal instructions for all medications to be taken at home. Provide information regarding medication boxes and easy-open bottles. Assist with creating a medication schedule for home use. Consider a pharmacist consult.
- Instruct caregivers to remove any rugs or objects on the floor. Shower chairs and handrails may need to be installed in the bathroom. Provide information related to emergency alert systems if needed.
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