Friday, April 4, 2014

Caregiving for Someone with Dementia

Greetings.  I hope it's been a wonderful week for you.  Things have been pretty busy on this end but good.  Today I want to talk about what it means to be a caregiver to someone with dementia.  On the next blog I'll share direct experiences.

Being a caregiver to someone with dementia is one of the most challenging things you will ever do.  It can also be one of the most rewarding while being simultaneously heartbreaking.  You watch while your loved one slowly loses who they are.  Your husband, wife, sister, brother, mother, or father are still there but no longer have the ability to fill the role in your life they have played for many years.

Each person experiences something slightly different although there is a lot of commonality.  What is common is that the individual with dementia develops agitation and frequently becomes depressed and disoriented.  They may not know where they are and eventually they will not know who you are.

Incontinence is common--sometimes because they forget they need to go to the bathroom and sometimes because they don't understand what the feeling of urinary or bowel pressure means. I'm sure there are other reasons as well but these are what I've experienced.

Sundowning is prevalent and this causes agitation and disorientation.  I've known some people to use full spectrum light bathing and they have said that this helps.

Simple tasks become increasingly difficult and the caregiver will need to assist with everything from dressing and bathing to cooking and eventually even feeding their loved one.

As the individual with dementia declines the stress on the caregiver increases as they take on more and more personal management of the loved one.  What is also very common if the husband or wife is the caregiver is that they will feel it is their job to be there 100% of the time for their loved one and their stress steadily rises. 

When people come to our support group we frequently tell them that it is critical for the caregiver to take care of the caregiver. They spend so much time as a caregiver that they forget to take care of themselves.  In order for for the caregiver to be a true support they must take care of their own needs and this includes general respite, rest, adult time with friends, and treating themselves regularly to something special such as a massage, manicure, or movie.  Some caregivers will feel that this is selfish.  It is not selfish and giving yourself a break is critical.  When we talk about respite care, this is all about the caregiver having a respite from the 24-hour stress of living with this condition.  Some ways you can give yourself respite include:
  1. Hiring a caregiver to come over a few hours a week so you can go out.
  2. Sending your loved one to an Adult Day Program like AltaGolden's.
  3. Sending your loved one for a few days to a residential facility that offers short term respite. 
 Respite is a critical part of being a caregiver.  It's one of the reason that we will have a minimum of two caregiver assigned to a client with dementia.  Even professional caregivers get burned out when working full time with a dementia client.

So, what are some of the tips and tricks.  First, be non-resistant.  It is very common for someone with dementia to make an assertion about something that is not logical or not factual or they will want to do something that is not sensible or safe.  Our natural reaction is to try to convince them that it is a bad idea and they need to do something different.  You will very quickly find that this won't work.  You will hit a brick wall as your loved one digs their heels in. 

What do you do?  Validate and redirect.  Validate their feelings and redirect their attention to another topic.  The more you try to force or convince the more resistance you will encounter and the more agitated both you and your loved one will become.  If you validate their feelings and then direct their attention to another topic you will have an easier time of things.

Another trick I have used is to ascertain how long the individual will remember a conversation and, if they are resistant to something I will wait a few minutes and then try something else.  We had a client that wanted to move her mother up north to a memory care community closer to home.  She called me up to discuss how I felt she should tell her mother about the change.  We discussed several options but I also told her that her mother's loop was about 5 minutes so if one approach didn't work she could just wait 5 minutes and try another.  When she found the one that created the least amount of anxiety she could stick with that approach each time they need to discuss the move.

The "loop" I just referenced is common.  Sometimes it is simply the length of time the individual can retain information.  Sometimes there is an actual repetitive looping of a story.  Several years ago we had a client who would get onto a negative story and then loop that story again and again to the exclusion of any other conversation.  Every time he got onto a negative story and then started looping it we immediately changed the subject.  His short term memory was such that he didn't even realize that we had changed the subject.  After about a month we got feedback from the man's next door neighbor that he was able to hold a conversation with the man for the first time in two years.  We broke the looping pattern. The son said his relationship with his Dad had improved for similar reasons.

Over the next few days I'll share more tips, discuss safety issues, and talk about activities. 

If you are enjoying these blogs please leave your comments and/or questions and "follow" the blog.  You may also visit us on Facebook, LinkedIn, and Twitter.  Just about every day I tweet activities from our Day Program.  You may also visit our website for more information.

If you are interested in the support group it is the second Wednesday of the month from 5-7pm at the Memory Center.  The group is meeting this coming Wednesday, it is free to all, and no reservation is needed although we do appreciate a call to let us know you are coming.  We serve coffee, tea, and snacks. Call 858-779-9254 for more information or visit us online at

Take care and have a great weekend!  Laura