COPING WITH A LOVED ONE WITH DEMENTIA
1.Difficulties and frustrations: many families find it frustrating to communicate with a loved one who has dementia. The person with dementia may repeat questions over and over or mistake you for someone else. It is important to remember that the person with dementia cannot control behavior caused by their disease.
2. Levels and types of dementia.
Dementia typically progresses slowly in three stages: early, middle and late (sometimes referred to as mild, moderate and severe in a medical context). Since dementia affects people in different ways, each person may experience dementia symptoms — or progress through the stages — differently.
3. Ask for help when you need it. This could mean asking family members and friends to help or reaching out to services online, such as Alzheimer’s.gov.
4. Susan T., a local R.N., has some great advice:
a. Do expect to take over higher function activities but ask their opinion as much as possible. This may take longer but you will get less pushback when they feel that they have at least some control over their life.
b. Don't expect them to be rational when faced with new or complex situations and don't keep reminding them that they have dementia. Do remember that in their controlled day-to-day setting, they believe that they are still functioning normally.
c. Don't focus all interactions only on what needs to be done, situations that need to be resolved, and health issues. This makes you the bad guy as you are a constant reminder of everything that is unpleasant about their current lives.
d.Do ask about what fun things that they are doing, what they are looking forward to, and things they have found interesting. Try throwing in some fun activities occasionally so that you remain family, not just their caretaker.
e.Don't take things personally and respond emotionally when they are frustrated and/or saying unkind things. Do try to find out what is behind their outburst and address that if possible or try to redirect the conversation if not. They usually forget what they were mad about fairly quickly. Do remember that their mind is making up a lot of information to fill in the blanks; for them, truth is in the moment. Try to figure out what really happened without accusations if it is something truly important, otherwise just let it go.
f. Don't expect them to understand and remember new pieces of verbal information. They will say that they understood and will remember but won't be able to repeat it back to you.
Don't remind them that you have just answered that same question 10 times in the last 15 minutes.
g.Do keep providing short answers to repeated answers. They know they can't remember things and may even make a joke about it themselves.
h.Don't remind them that they were already provided with emailed or written information. Do keep emails you have sent and copies of printed information. That way you can resend the email or provide a second copy without having to regenerate it. Don't give complex, long answers when they ask a broad question. Do ask what it is they want to know. It usually turns out to be something very specific and once you provide a short, simple answer, they are satisfied.
6. A local 63 y.o.woman who is caring for an elderly mother, recommends:
a.There is a big difference in dealing with a patient with dementia and a family member with dementia. Loved ones don't go away at the end of a shift and they seem to push all your triggers.
b.Acknowledge that this is outside your knowledge base and seek information from professionals and others who have been through this.
c.Cut yourself slack if you don't always say the right thing or just lose it occasionally, this is very, very difficult.
d.Make sure you have your own support system, especially if you are the primary caregiver.
e.Feel ok about asking people to just listen, not offer their solutions to the problem (unless that is what you are wanting). Sometimes just talking it out helps you come up with solutions that will work in your particular situation.
f.Make sure that being a caregiver doesn't completely take over your life, you still need to take care of yourself. Just like you are told to put on your oxygen mask before helping others.
Try to remember that you love the person, even if you don't like them much right now. Try to do things that will bring you both joy.
Lori Vance, Body Image Fitness, LLC, 503-351-6476
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