By: Nicole Ruggiano, PhD, MSW
It is never easy for someone to receive a diagnosis of Alzheimer's disease or other type of dementia. In fact, research has shown that older adults are more afraid about dementia than they are afraid of cancer. It is normal for those who are diagnosed with dementia to experience a number of emotions, including fear about the future, anger, depression and denial. If your loved one has recently been diagnosed with a form of dementia and is having a hard time coping with their diagnosis, there are things that family and friends can do to help them in these early stages of their condition.
First, as a caregiver, allow yourself time to grieve. It is normal for family members to experience depression, anger, or fear about an uncertain future after a loved one is diagnosed with dementia. However, it's important to remember that the sooner family members can accept the diagnosis, the better prepared they are to help the person with dementia accept it. Once you are in a place to support your loved one who has been diagnosed, there are some ways to help them.
Continue doing enjoyable activities.
How fast a person's dementia progresses varies, with some people declining quickly while others may stay in the early or moderate stages for some time. For those who are recently diagnosed, they can still participate in most of the activities they enjoyed before their diagnosis. In some cases you may need to adapt activities for your loved one to participate. Take the example of Ted and Nancy:
Ted and Nancy have been married for thirty-five years. Ten years ago the couple joined a square dancing group for exercise and meet up with friends every Thursday night for square dancing. About a year ago, Nancy was diagnosed with Alzheimer's disease. Her symptoms include occasional memory problems and confusion. However, Nancy was still able to dance so they continued meeting their friends on Thursday night. Lately, Nancy has days when she becomes very upset in the late afternoons and early evenings. This has caused her and Ted to miss the last few weeks of square dancing. Ted asked their doctor about this and learned that this is a common symptom of dementia, called sundowning. Ted learned that some of their friends also attend a square dancing group that meets early on Saturday afternoons. Ted and Nancy started attending the Saturday session regularly. Also, Ted found that the exercise early in the day helped Nancy be more restful in the evenings and helped with her sundowning.
Find out what kind of help and care they want.
Those in early stage of dementia can usually do many daily tasks they did before their diagnosis and make decisions about their day-to-day living. However, in an effort to "help" the person with dementia sometimes family and friends try to do things for the person that they can still do themselves, which can make them frustrated. Talk with your loved one about what they can still do themselves and what they need help with. Similar to the case above, some activities may need to be adapted for your loved one to keep doing them.
This is also a time to discuss your loved one's preferences for long-term care, if it is needed in the future. Most families do not discuss long term care preferences with their loved one until it is too late. Oftentimes, it isn't until the person's dementia has progressed to the point where they need long-term care immediately and cannot be an active participant in making care decisions.
Have patience when they cannot remember things or repeat themselves.
People with dementia often become frustrated when their symptoms and in some cases may even forget they have a dementia diagnosis. It can also be frustrating for family and friends to have their loved one repeat the same questions over and over again, or say things that are incorrect. Try to be patient. There are some tips for handling such issues in conversations:
Talk to others who can help with coping.
There are support groups for people in early-stage dementia and caregivers of people with dementia. Many people who are dealing with dementia find comfort in talking to others who understand what they are going through and are experiencing the same things. Those who have been dealing with dementia longer than you may have tips and suggestions on how to cope or manage dementia symptoms. A good example of this is from an online support group that took place a few years ago. The caregivers did not know each other and it took some time for them to feel comfortable sharing their thoughts and feelings with others in the group. One day one of the caregivers mentioned to the others how frustrated she gets when her husband talked to her in ways she found to be mean and aggressive, especially since he did not do this before he had dementia. This immediately sparked interaction among the group members, since other caregivers were experiencing the same thing. By sharing their similar experiences, it reminded them that when their loved one talked to them that way it wasn't personal.
If you or your loved one is experiencing depression you should also talk to your doctor. There may be medication or talk therapy that can help you manage depressed feelings. Also, in any case where someone feels depressed to the point that they think about hurting themselves, seek help immediately by calling the national crisis hotline at 9-8-8.
The take away.
Dealing with a new diagnosis of dementia is not easy for the person with the diagnosis or their family or friends. While coping with the diagnosis may take time, these tips may help with making the grieving process easier. This article discusses the emotional aspects of a dementia diagnosis. Those who are new to caregiving may also benefit from information about how to make a care plan for someone who is recently diagnosed with dementia.
Additional information that may help:
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