Caregiver's Role in Caring for People with Alzheimer's
People with Alzheimer’s disease are usually cared for by family members or friends, and the vast majority of people with Alzheimer’s receive care in their home.1 Providing care for someone with Alzheimer’s disease can change over time, based on symptom severity and the level of assistance needed, and it can become very challenging for the caregiver. While caregivers provide the care necessary to help a person with Alzheimer’s, they also need to take care of themselves as well.
Progression of the role as a caregiver
In the early stages Alzheimer’s disease, a person may really only need some assistance and/or emotional support.2 If the caregiver is a partner or family member, this is a good time to work with the person on care planning, any legal and financial plans, and set them up with varioussupport services. As the disease progresses and more nerve cells in the brain are damaged, the person will require more and more care.
Caregiving in the middle and late stages of Alzheimer’s disease will shift over time, and there may need to be several caregivers to share the stressors and various tasks. Daily routines need to be adapted, routine and structure need to be established, and various changes in behavior, communication, abilities to do everyday tasks, feeding, toileting, and dressing, will all need to be monitored and dealt with as necessary.3,4 In late-stage Alzheimer’s disease in particular, round-the-clock care is necessary, and a trained home health care professional might be needed at times to assist with medical care, safely moving the person, changing soiled undergarments or bed pads, or feeding. Sometimes home caregiving cannot provide the level of assistance the individual needs and moving to a memory care home is necessary.4 Each person’s journey with Alzheimer’s can look very different, and it’s helpful to remember that. Some people progress very quickly through the disease stages, while others do not; some stay longer in some stages whereas others do not. Try not to compare disease progression or caregiver duties, as these can vary widely.
Alzheimer’s disease is not simply memory loss. There are behaviors associated with the disease that can be very distressing for the caregiver. This is why it’s helpful to talk to the person’s doctor about any symptoms that arise, how to best deal with them, and become educated on ways to cope with the symptoms and help the person manage them, especially as the disease progresses. There are also training classes and support groups offered to caregivers to help cope and manage an Alzheimer’s diagnosis. You can contact your local Alzheimer’s organizations or go to Alz.org to find classes and support near you.
In the early stage of Alzheimer’s disease, family members may be able to provide long-distance caregiving, since the person may still be able to live fairly independently. This will change as the disease progresses and the person needs someone closer and more often. While it may seem daunting, there are things that caregivers can do for the success of long-distance caregiving5:
- Know everything you need to about the person’s illness, medications, resources, and so forth: this will help you with planning and understanding care, talking to doctors, and assist in managing care
- Plan visits ahead of time: errands the person might have to do, goals to achieve; doctor’s appointments or treatments, caregiving responsibilities, etc – this will help organize visits and ensure everything that needs to get done, gets done
- Stay in touch with the person’s care team
- Don’t forget about the family member: there’s so much to do in caregiving, especially long-distance caregiving, that it’s easy to forget to just be with the person – make time to just hang out or do something fun with the person
Caregiving isn’t easy, and long-distance caregiving brings its own set of challenges. It may be worth looking into a local caregiver even minimally, to help with caregiving basics that may not be able to be done long-distance. Local caregivers can also help observe the individual and let long-distance caregivers know when long-distance care isn’t safe for the person and they need more intensive regular care.
Caring for the caregiver
Caregiving can be stressful, and caregivers for those with Alzheimer’s disease report high levels of stress.6 Caregivers should take care of themselves in order to help reduce the risk of burnout, depression, anger, and staying healthy. Caregivers can’t care for others if they themselves aren’t well – you can’t pour from an empty cup, as the saying goes. Signs that caregivers may be under stress include6:
- Anger at the person with Alzheimer’s disease
- Social withdrawal
- Depression or anxiety, irritability
- Exhaustion that interferes with everyday, necessary activities or tasks
- Health problems that start arising
If these symptoms arise on a regular basis, a caregiver might be under significant stress. Managing stress in a healthy, productive way is helpful so that caregivers and the person with Alzheimer’s disease both feel supported and the relationship doesn’t suffer as a result. Ways to manage stress include6,7:
- Finding community resources to assist caregiving, like visiting nurses, in-home nurses, respite care, or adult day programs
- Support groups for caregivers, either in-person or online
- Relaxation techniques like visualization, meditation or breathing exercises, and progressive muscle relaxation
- Regular doctor visits to take care of general health and wellness
- Taking breaks when necessary
- Eating a healthy diet
- Asking for help when necessary
- Maintaining social connections and not isolating oneself
- Talking with clergy
Caregiving for someone with Alzheimer’s is a wonderful thing to do, but it is not without its own stressors. Caregivers need to take time for themselves so that they are able to better take care of others. If caregiving starts to become detrimental to a caregiver’s health or well-being, then talk to someone immediately. Everyone needs help sometimes, and it’s nothing to be ashamed of.