Identify a caregiver
Mapping out the caregiving "team" for someone living with dementia is invaluable to your care plan. Consider using a tool or create a template for your documentation that considers: if relevant, who helps the person with daily tasks like ADLs and IADLs, who is designated as a surrogate decision maker for medical and/or legal decisions, from who does the person living with dementia receive other help or support. This tool may help you structure this assessment.
How to assess the caregiver's needs
Assessing "job readiness"
Caregivers are often in the role without a formal transition or any job training, and caregiving can be complex and require new skills. Ask a caregiver if they feel prepared for their role and if they feel more education or training would be helpful. If they are in a CMS GUIDE program, they may be getting this support. But if not, they may need to be connected to programs or resources that can help them get skills, for example:
- The Family Caregiver Alliance resources
- LA County Advancing Caregivers training for caregivers
- Video series from Career Pathways
- Alzheimer's Association list of training programs
Assessing the psychological and emotional impact of caregiving
Caregivers may find that their own physical and mental health are impacted by caring for a person living with dementia. This may include feelings of overwhelm or "burden". Caregivers may feel isolated or not allowed to express their feelings about the care arrangement.
Consider the following questions to explore with the caregiver:
- To provide the very best patient care, I also need to pay attention to my patient’s caregivers. Can you tell me how you’re doing/feeling?
- I know that many care partners find the caregiving role to be stressful. How are you coping with these responsibilities?
Getting specific: screening tools
There are several tools to screen for caregiver burden, many of which were created from caregivers providing dementia care. However, many tools are lengthy, and lack cultural and/or linguistic sensitivity. The Zarit Burden Short Form has been validated in caregivers for persons living with dementia and is short and copied here:
The following is a list of statements that reflect how people sometimes feel when taking care of another person. Rate each statement.
| Statement | Never | Rarely | Sometimes | Frequently | Nearly Always |
|---|---|---|---|---|---|
| Do you feel that because of your relative that you don't have enough time for yourself? | 0 | 1 | 2 | 3 | 4 |
| Do you feel stressed between caring for your relative and trying to meet other responsibilities (work, home)? | 0 | 1 | 2 | 3 | 4 |
| Do you feel strained when you are around your relative? | 0 | 1 | 2 | 3 | 4 |
| Do you feel uncertain about what to do about your relative? | 0 | 1 | 2 | 3 | 4 |
Total the score. (A score of 8 or greater indicates high burden, maximum score = 16). It is important to note that while the Zarit Burden Short Form refers to a “relative,” this tool can be administered to anyone who identifies are a caregiver regardless of their familial relationship to the care recipient.
Actions to support caregivers
For any caregiver, these steps are important. If a person has high caregiver burden, then prioritize the following actions:
- Involve the caregiver as a member of the healthcare team by acknowledging their crucial role as part of the care of the person living with dementia. Offer education and support around the patient’s condition.
- Encourage the caregiver to take notes about their caregiving experience and share them with you and/or their own primary care provider.
- Recommend that the caregiver cares for their own health by maintaining connection with their own healthcare providers.
- Refer caregivers to training and educational opportunities, and peer support groups offered through organizations such as the Alzheimer’s Association.
- Engage additional healthcare team members in supporting the caregiver, such as social workers, who can assist with connecting the caregiver to resources such as respite care, transportation, and meal delivery services.
- Ensure that the person's financial situation as a caregiver is optimized and, if eligible, refer them to the IHSS program for employment support.
Caregiver support services
Referral to caregiver support services is good clinical practice and reduces burden. Here are some additional resources for both healthcare providers and caregivers.