Caring for an older adult with dementia
Caring for an older adult with dementia comes with specific challenges. This article explains some of those challenges and then offers basic tips for caregivers in this position.
Challenges of caring for someone with dementia
Caring for an older adult with dementia comes with specific challenges, including:
- A very high caregiver burden, often leading to stress and depression.1
- Difficult behaviors as the person’s dementia progresses.
- The need to put special safety measures in place to keep the person from wandering.
Although there is a long list of specific strategies for dementia caregivers, important ones are to reduce caregiver stress and depression and to manage dementia behaviors including agitation, anger, and anxiety; sundowning and disturbed sleep; and wandering and elopement.
Reduce caregiver stress and depression
Caregivers of people with dementia are much more likely to be stressed, anxious, and depressed than other caregivers.2 For instance, up to 40% of family caregivers of people with dementia say they are depressed, compared with only around 20% of those caring for those with schizophrenia or stroke.3
Caregivers of persons with dementia also tend to give care for many more hours of the day (9 hours a day on average,4 compared to an overall average of 3.55) and for more years.6 Add to this the fact that these caregivers are more likely to say they had no say in becoming a caregiver, and this adds to caregiver stress.
Some signs of caregiver stress are:
- anger at the person being cared for
- withdrawal from friends and social activities
Ways to reduce and manage stress include joining a support group, exercising and socializing, and educating oneself.
Join a support group
There are many online and in-person support groups for caregivers, and the Alzheimer’s Foundation of America (AFA) offers free support groups for those looking after people with Alzheimer’s and dementia. These groups are led by the AFA’s licensed social workers. Groups and forums can provide a safe place to vent, grieve, and ask for dementia-specific advice.
Exercise and socialize
It is very important for caregivers of people with dementia to prioritize staying healthy. Two ways to do this are making sure to get regular exercise and spending time around other people. Exercising releases beneficial hormones into the body, which helps to offset stress hormones.7 Spending time with others, or even just in the presence of others (such as at a coffee shop or mall) can sharply reduce the stress chemicals associated with social isolation and loneliness.8
Feeling out of control greatly adds to stress. This feeling can be eased by learning about dementia and what to expect as it progresses. Reading articles and taking part in educational programs such as those offered by the Alzheimer’s Association also can help the caregiver understand and cope with distressing dementia behaviors.
Manage agitation, anger, and anxiety
As people with Alzheimer’s disease and other dementias become less able to handle new information and stimuli, they can become anxious, angry, hostile, and irritable. Changes to their routine, living environment, or the people around them can trigger these symptoms.
When caregivers first see these kinds of behaviors, they should have the person assessed by a doctor, as medical treatments may be available. They should also check that the person isn’t experiencing physical discomfort from being hungry, thirsty, constipated, tired, etc. Dehydration and urinary-tract infections should also be ruled out.
Beyond that, caregivers can help the person feel calmer by:
- creating a quiet, safe place
- minimizing noise, glare, and background distractions
- limiting stimulants such as caffeine and nicotine
- finding ways for the person to burn off excess energy, such as regular short walks
Recommended responses to agitated emotions include:
- Giving the person physical space
- Speaking calmly and reassuringly
- Slowing down motions
- Sharing experiences with members of a support group or online forum
Manage sundowning and disturbed sleep
Many people with Alzheimer’s and other dementias become agitated, confused, and physically active starting at dusk and continuing through the night. This is known as “sundowning,” because it starts when the sun goes down.
The cause of sundowning is unknown. However, the following strategies have been shown to reduce it and other disturbed nighttime behavior.
- Create a regular routine for the person—for instance, waking up, having meals, and going for a walk at the same time each day
- Make lunch the largest meal of the day instead of dinner
- Limit daytime naps
- Schedule regular light exercise, such as walking, ideally outside in the sunlight
- Take notes on what happens around the sundowning periods and see if there are possible triggers at that time
- Keep lights bright to reduce confusing shadows
- Allow the person to pace, with supervision, as much as they need to; do not argue with them or try to restrain them
If non-medical strategies don’t work, talk to the person’s doctor about the possibility of medication.
Manage wandering and “elopement”
People with Alzheimer’s disease or another dementia can begin to get disoriented at any stage of their disease. When this happens, many of them start to wander, leaving the house, the car, or other locations they may be in, such as adult daycare facilities. This behavior, known as “elopement,” can put the older adult’s life at risk.
Signs that a person is at risk for wandering include:
- Returning from a walk or drive later than usual
- Asking to “go home” even though they are already home
- Forgetting where rooms within the house are—for instance, not knowing how to get to the bathroom
- Asking where friends and family members are
There are safety measures that caregivers need to take if a person starts wandering. A few basic ones are to:
- Install a monitoring device, warning bell, and/or pressure-sensitive mat at the door to signal when it is opened
- Put deadbolts above or below the person’s line of sight. (Never lock the person in at home alone.)
- Consider having the person wear a GPS tracker that will identify their location if they have gotten lost. A device that can be worn continually on the body, such as a wristband, is better than one that is kept in clothing or accessories: there is no guarantee that the person will put on their shoes, take their wallet, etc., when they start wandering.
- Make car keys inaccessible, in case the person forgets that they no longer drive
If a person has wandered, start looking for them immediately. If they aren’t found within 15 minutes, call 911 to file a missing person’s report. Tell the authorities that the person has dementia.
Anticipate and manage impacts on your personal life
Deal with caregiver burnout
Deal with caregiver depression
Dementia: Support for caregivers
Dementia: Understanding behavior changes
Get help and support
Provide care while ensuring dignity
Take care of yourself emotionally
Take care of yourself physically
1 Caregiving for a Person with Alzheimer’s Disease or a Related Dementia. CDC.
2 Caregiving for a Person with Alzheimer’s Disease or a Related Dementia. CDC.
3 2020 Alzheimer’s disease facts and figures. Alzheimer’s Association.
4 Caregiving for a Person with Alzheimer’s Disease or a Related Dementia. CDC.
5 Caregiver Statistics: Facts About Family Caregivers. AgingCare.
6 Caregiver Statistics: Demographics. Family Caregiver Alliance.
7 Exercise and stress: Get moving to manage stress. Mayo Clinic.
8 Oxytocin and dopamine: the rewards of socializing. Naturopathic Doctor News & Review.