The term used for caregiver rest, or a short break for relief, is respite care. Respite could be a short period every day where you get out to a favorite activity, to do errands or simply relax. Or, it could be a week more break while you go on vacation or attend a family event. It could even be having someone to help you during the most challenging hours of care, to support each other and more easily handle your loved one’s needs (and restlessness, agitation, redirection, responding to fears/concerns).
What are potential sources of Respite Care?
- Family, friends, church and other social groups are often the first line of defense. Can your sister come to stay with Mom while you go away? Can friends help you run errands or sit with your loved one while you have an appointment?
- Hired home caregivers (home health agencies for example) can come in for short-term assistance or on a regular basis.
- Assisted care facilitiess often offer respite care, in which a person can be temporarily admitted. Some also offer day programs, where a person can attend without residing there.
- Adult day programs often offer different hours of attendance, so for example, your loved one could attend in the afternoons or mornings while you attend to other activities.
- For respite care costs (i.e. all the other options here besides the first), contact your local Area Agency on Aging or Alzheimer’s Association about financial assistance. There is some limited funding for short-term caregiver respite for which you might qualify. Read more about Respite Senior Care Costs for various options.
The biggest question or concern for a Sundowners caregiver is “How will my loved one react?” or “How can someone else handle the situation?” when you know your loved one requires special care and attention. This is a very valid concern. Transitions and changes are difficult for any person with dementia and especially concerning when your loved one sundowns. It is important to evaluate which options will provide the least disruption and be best for your loved one. Equally important will be preparing “substitute” caregivers to be better enabled to handle the situation.
Here are a couple tips:
- Evaluate what setting/option might work best for your loved one. A familiar family member or friend in the normal setting may be least disrupting. However, it can quickly fall apart if that person is not used to the situation or trained in working with someone with Sundowners. Maybe respite care during the hours when your loved one is most calm (i.e. adult day care or hired caregiver in the morning) would provide you a break, while allowing you to be there when you feel you can best handle the more challenging times.
- Ensure any providers you are considering (home health agency, assisted living) have extensive experience working with individuals with dementia and have knowledge of Sundowners Syndrome. Ask them how they would deal with your loved one’s behaviors and what type of training and experience their caregivers have in this area.
- Provide “substitute caregivers” with background information and tips that will help them in caring. For example, what tends to bother your loved one, what is the normal routine, what helps to calm him/her down or provides reassurance or distraction? What are some topics of conversation or activities that he/she enjoys? Paint a picture of a typical day as well as some of the more sporadic behaviors or occasional issues that arise. You can get more tips for Alzheimer’s caregivers preparing for alternate care options and a Checklist of Items to Consider to Better Prepare Substitute Caregivers.
Have you had an experience with respite care? Successful or otherwise?
What is your biggest concern about respite care for your loved one with Sundowners?