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Helping Families Cope with Dementia


It is always a sad moment when a family gets confirmation that their loved one is suffering from dementia.  As this disease progresses, it can actually be more difficult on the family than on the patient themselves.

In the Beginning

When a patient is diagnosed with dementia, in most cases they are still fully aware of their medical issues and will most likely comprehend their newly diagnosed condition. At this point, the patient may want to express their wishes with loved ones, which can be very difficult. When a person is aware they are facing a terminal situation, it’s natural that they want to provide their family with information.  This can be of great benefit for the patient, to share their wishes, and to ensure their family is aware of what needs to take place in the future.  Many family members resist this, insisting they don’t want to hear anything about their love one passing.  If you can offer a solution, it may help all parties involved to accept the situation.
 
One option is to suggest a timed discussion between the patient and their family members. Its natural the family does not want to dwell on the future, however during the time that the patient has their faculties, it is only fair to allow them to express their desires and wishes, such as DNR’s. A one hour discussion should allow ample amount of time to discuss plans, arrangements, and wishes for a time that the patient may be unable to make decisions. Everything should be discussed, and then at the end of the one hour, the conversation can come to an end.  That allows the patient to clear their mind, and the family can give one hour and then not discuss it again.

Disease Progression

Every patient is different, and dementia progresses at a variation of speed.  On average, a patient diagnosed with dementia will have a lifespan of about 2 years, however that is average, some patients live 10 or more. Families may benefit by working out a plan ahead of time, a schedule if needed, so that a family member can check on and visit with the patient as often as desired. The family will also need to decide who will pay bills and provide care, essentially to oversee for the well-being of the patient. If the patient is still living at home, or with loved ones, large signs can help and enable independence at home.  A sign for the restroom and the patient’s bedroom can help them to recall where to go without asking. As the disease progresses, advise about medications that can help slow the progression down.The medication is available in a patch form so they are not adding an additional pill. 

Also at this stage, it’s very important to see that the patient’s family has support. A social worker can help, and there are support groups available to offer great tips and suggestions, it helps to have others that can relate to what they are going through. 

End Stage Dementia

At this stage of the disease, in many ways their loved one is already gone.  Most families have accepted the process, and understand that arrangements should be made for plans after the patient has passed away. Again, this is a time that support or counseling can be of great benefit, and it may help to suggest it.   

One thing that is quite confusing with dementia is recognizing it in the beginning. We all reach a point in life that we sometimes forget and misplace things; this is just a normal part of life. There are tests that a health care professional can administer; this will help to establish a baseline cognition guideline for further testing. Forgetting where they parked at the grocery store is not that unusual, forgetting where they live is a reason for further testing right away. Dementia can take a toll on family members as well as the patient, be sure to have support literature or suggestions ready for the family of the patient. Most hospitals have groups that meet regularly to offer support, so consult the hospital social worker to meet with the family. 

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