Managing family members with dementia
The Alzheimer’s Association estimates that worldwide, nearly 44 million people have Alzheimer’s or a related dementia. Dementia is most common in Western Europe and North America. In the United States, one in nine individuals over the age of 65 have a chronic dementia condition. Unfortunately, only one in four people with Alzheimer’s disease have been diagnosed, making it hard to measure the actual impact on families and our health care system. The cost of caring for Alzheimer’s patients in the U.S. is estimated to be $236 billion in 2016. For diagnosed dementia cases in 2014, Medicare paid out $113 billion, Medicaid $41 billion, out-of-pocket $44 billion and other payment sources $29 billion.
In the United States, it is estimated that at any one time over 40% or more of individuals with dementia are cared for by family members, with nursing homes and assisted-care settings caring for the rest. This article will focus on home management suggestions for families caring for a dementia victim.
Aggression may be verbal (shouting or name calling) or physical (striking, pushing, etc.). There is often no clear trigger that causes this behavior. Suggestions about management offered by the Alzheimer’s Association:
• Rule out pain as a cause and try to identify the immediate cause.
• Focus on the feeling communicated by the behavior, not what happened.
• Try not to act upset if directed at you.
• Limit distractions in the environment. Loud noises, television and other people shouting should be avoided.
• Use music, massage, or exercise to soothe the person.
• Speak calmly and clearly.
• Make sure you and the person are safe. This may mean that if the person cannot calm down, seek assistance from others, call EMTs, or 911.
Anxiety & agitation
• Anxiety and agitation can occur for many reasons for a person with dementia. It is important for the caregivers to identify triggers that will set off this behavior. These triggers may be found in the person’s surroundings, time of day, pain, hunger, need for sleep, or sudden changes in the environment.
• Check for pain and sources of discomfort. For an individual who cannot verbalize his/her discomfort, agitation may come from uncomfortable environmental factors (i.e., too cold, too warm), unrecognized injury, medication, or internal body discomfort such as a urinary tract infection.
• If the person is demonstrating or verbalizing frustration, try to identify the cause.
• Provide reassurance that you are there and want to provide help.
• Engage the person in art, music and other activity to distract them.
• Decrease noise and distraction or relocate the person to a quieter place.
• Find outlets for restlessness such as taking a walk or car ride
Wandering & getting lost
This is probably one of the most distressing behaviors for a caregiver or family. It is also one of the most common behaviors for an Alzheimer’s/dementia individual. Six in 10 patients will wander and/or get lost at any stage of their illness. They may be trying to find their way home when they are already there, or trying to duplicate a familiar route they have taken in their life such as going to work or school. The demented wandering patient is at extremely high risk for injury, environmental exposure and death.
• Encourage activities to discourage anxiety and restlessness. Involve the person in household activities such as doing dishes, folding laundry and assisting in preparing meals; or in supervised outside activities such as taking walks and gardening.
• Make sure that friends, neighbors and local law enforcement know that the person may be at risk of wandering.
• Make the home safer by installing deadbolts, slide locks and alarm systems on exterior doors, and limit access to potentially danger areas in the home (e.g., basement stairs).
• Consider enrollment in location-management services such as MedicAlert or Alzheimer’s Association Comfort Zone. These services either assist local law enforcement to locate a lost or wandering person when reported or web-based services to help families locate the individual.
• Limit access to car keys in all settings with individuals who have wandered and gotten lost. If at home, never leave keys on counters, in the car ignition or where they can be easily found.
What are signs and symptoms of dementia?
The Alzheimer’s Association lists 10 common signs of Alzheimer’s disease, which also pertain to other forms of dementia:
1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks at home, at work, or at leisure
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality
• Identity problems
• Anxiety or agitation
• Wandering and getting lost
• Trouble with sleep