Eighty-three percent of the assistance provided to people living with dementia in their homes in the United States comes from family members, friends, or other unpaid caregivers. Approximately one quarter of dementia caregivers are also “sandwich generation” caregivers, meaning that they are not only caring for an aging parent, but also providing care for children under age 18. Because of the 24/7 care required, caring for a loved one with dementia can take a devastating toll on caregivers. Compared with other caregivers for people without dementia, twice as many caregivers for people with dementia indicate substantial emotional, financial, and physical difficulties.^[1] See Figure 10.9^[2] of an image of a caregiver daughter caring for her mother with dementia.

Signs of caregiver role strain for family caregivers may include these behaviors or thoughts^[3]:

• Denial about the disease and its effect on the person who has been diagnosed. For example, the caregiver might say, “I know Mom is going to get better.”
• Anxiety about the future and facing another day. For example, the caregiver might say, “What happens when he needs more care than I can provide?”
• Sleeplessness caused by concerns. For example, the caregiver might say, “What if she wanders out of the house or falls and hurts herself?”
• Difficulties at work especially if the need for time off impact their job duties or the stress and fatigue from caregiving compromise their performance.
• Changes in relationships and roles. Some people find it challenging to assume responsibility for a family member’s needs as a caregiver while still in the role of a spouse or a daughter/son. These feelings can cause additional feelings of stress and grief.

Signs of caregiver role strain for family or paid caregivers may include the following^[4]:

• Anger at the person with dementia or frustration that they can’t do the things they used to be able to do. For example, the caregiver might say, “He knows how to get dressed; he’s just being stubborn.”
• Social withdrawal from friends and activities. For example, the caregiver may say, “I don’t care about visiting with my friends anymore.”
• Depression or decreased ability to cope. For example, the caregiver might say, “I just don’t care anymore.”
• Exhaustion that makes it difficult for them to complete necessary daily tasks. For example, the caregiver might say, “I’m too tired to prepare meals.”
• Irritability, moodiness, or negative responses.
• Lack of concentration that makes it difficult to perform familiar tasks. For example, the caregiver might say, “I was so busy; I forgot my appointment.”
• Health problems that begin to take a mental and physical toll. For example, the caregiver might say, “I can’t remember the last time I felt good.”

There are resources available to assist home caregivers with dependent family members such as adult day care, respite care, or hospice care. Adult day centers offer people with dementia, developmental disorders, and other chronic mental health illnesses the opportunity to be social and to participate in activities in a safe environment, while also giving their caregivers the opportunity to work, run errands, or take a break. Respite care can be provided at home (by a volunteer or paid service) or in a care setting, such as adult day care or residential facility, to provide the caregiver a much-needed break. If the person with Alzheimer’s or other dementia prefers a communal living environment or requires more care than can be safely provided at home, a residential facility such as assisted living or long-term care may be the best option for meeting the individual’s needs. Different types of facilities provide different levels of care, depending on the person’s needs.^[5] These varying levels were presented in the Chapter 2.6, “Health Care Settings” section.

Caregiver role strain can also occur when health care providers feel overwhelmed or unable to appropriately provide the care needed to manage the complex holistic needs of patients dependent upon them for their care. It can also be caused by working extended shifts, working several days in a row without time off, or from the daily repetition of managing clients with high care needs.

It may be difficult for you as a caregiver to recognize when you are feeling overwhelmed by the responsibility for providing care to many dependent people with high care needs. Although this is the foundation of being a competent and dependable caregiver, providing care when you are not at your best can be unsafe for both you and those you care for. Feelings of stress overload related to client care should be communicated with your supervisor. Working while experiencing these feelings can result in poor decision-making and possibly result in negligence in your care. Here are some things to do to help manage your work responsibilities and stay healthy:

• Get adequate sleep
• Eat a nutritious diet
• Get regular physical activity
• Rotate shifts, units, or clients as able
• Talk with a trusted support person or professional while following HIPAA guidelines
• Take time off as able
• Practice mindfulness, meditation, or yoga
• Get a massage
• Engage in enjoyable leisure activities

Just as you would report a change in behavior for a resident, you should treat yourself in the same manner. Knowing when you need a break or additional assistance is a responsible and professional action. As a coworker, recognize when other staff are experiencing caregiver role strain and offer assistance so they can take a break.