If you are an unpaid caregiver to a loved one, you are not alone, as more than 44 million individuals in the U.S. serve as informal and unpaid caregivers. A significant percentage of these individuals provide care for someone with dementia. In fact, according to the Alzheimer’s Association, 83% of the assistance provided to American elders is from friends, relatives, and other unpaid caregivers. From this percentage, 48% of the caregivers provide help to someone who has Alzheimer’s disease or another related dementia.
Caring for a person with dementia is hard work, and it can be particularly frustrating and stressful if you don’t know what to expect as your loved one’s dementia progresses and worsens. Early signs of dementia include memory problems, inability to learn new things, mood swings, poor judgment and decisions, difficulty speaking, trouble with familiar tasks, and disorientation to time and place. In later stages of dementia, symptoms expand to include loss of interest in things your loved one used to enjoy, forgetting names of family members, loss of awareness of surroundings, and incontinence (the lack of ability to control urination and defecation).
Witnessing these new behaviors and troubles in your loved one can be upsetting and confusing. Although these symptoms are minimally aided by medication, drugs can help slow the progression of some aspects of the disease. There are also a number of things you, the caregiver, can do to interpret and respond to symptoms to minimize disruption to daily life and maximize quality of life. Remember, first talk to your doctor. Medical reasons may be behind your loved one’s behavior, and it is important to rule those out (and treat them!) before attempting to cope with them yourself.
As your loved one’s dementia progresses, it will become inevitable that hands-on care will be needed. Many people with dementia will need help with tasks called “Instrumental Activities of Daily Living,” or IADLs. IADLs are activities that we perform from day to day that add to our quality of life, but are not as basic to self-care as ADLs or activities of daily living. ADLs are the activities that we must perform every day in order to take care of ourselves. Individuals with dementia may also need help with these tasks.
For many caregiving tasks, using the following positive approach will help loved ones with dementia to better understand what is going on and reduce anxiety, especially in middle to late stages of dementia.
It may be helpful for caregivers to put their hand under the hands of persons with dementia when guiding them in a task such as using a fork, brushing one’s hair or tying shoes. Persons with dementia often just need to be reminded how to do something at first and then are able to do it on their own. Let them do as much as they can do on their own.
Persons with dementia may be able to perform some tasks independently, with some difficulty, or with additional assistance. However, an individual’s performance will change over time as well. It is a good idea to take notes on the abilities of your loved one and how they change over time. By doing so, when you take your loved one to the physician, you can supply information that can help him / her better understand the progression of the disease.
An easy way to categorize one’s abilities for tracking is to consider the well-defined and commonly used, Activities of Daily Living and Instrumental Activities of Daily Living
Activities of Daily Living
Instrumental Activities of Daily Living
Everyone’s day goes much more smoothly and is much more enjoyable when working with, rather than against, persons with dementia. The following tips will assist caregivers in gaining the cooperation of care recipients suffering from dementia while allowing them to keep their dignity and autonomy. They will also help to ease the individual’s anxiety which in itself can be the cause of one’s unwillingness to cooperate.
Dementia encompasses so much more than just “forgetfulness,” as people commonly think. Memory problems are certainly a component of dementia, but communication, emotional, and behavior problems are also often present. Caregivers are frequently taken by surprise when their loved one suddenly has problems in one of these areas, especially if the only early symptoms were memory problems. Follow the links below to learn about some of the most common symptoms and problems of dementia and to get some caregiver tips for dealing with these issues:
There is more to being a caregiver than simply providing everyday care to a person with dementia. There are financial and legal issues that must be managed, and the future must also be considered, as many people aren’t equipped to handle the needs of a person with late stage dementia. Therefore, short- and long-term care and living options should be considered. It’s also imperative that caregivers remember to take care of themselves. Click here to learn about care for caregivers, such as dealing with stress and finding support.