AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question Hi Mary,
I have recently started working as a Recreational Activities Officer in an Aged Care Facility that has a Dementia Specific section which other facilities that I have worked in before haven't catered for. I have been told that some of the clients that they may have in this section at times, do show the signs of sundowners. I was wondering if you may be able to point me in the right direction for obtaining resources for putting programs in place, and what types of programs are best, that will help make their lifestyle as close to "normal" as is possible.
Many thanks
Susan
Answer There are lots of good resources - you can start with a couple of good books
If by sundowning you mean, a tendency to "catastrophic reactions" or agitation particularly later in the day - you have to always keep in mind what their day is like - they are holding on with their fingernails, and life has become a swirling, confusing jumble that makes no sense. Their days can be filled with boredom, obstacles, mistakes and failures - its actually very stressful for them. They also will have perception problems. The brain damage from Alzheimer's can cause disturbances to body rhythms as well, so sleep and wake patterns are disrupted.
Like most of us, they cope best with stress when they are at their best - relaxed, rested, comfortable, fed - which is why is often best to schedule more challenging activities for those times (and why those times are also better for things like bathing they may find distressing). You can imagine why so many get agitated in the evening. They are tired, they have had a long day of coping, there may be a swirl of activity in the evening, the lower light levels may contribute to perceptual problems - they can just get topped out - kind of like a toddler who will overreact with tantrums or crabbiness when they are overtired, hungry, not feeling well or just plain frustrated and thwarted.
You might also want to read the 36 Hour Day by Mace and Rabin, published by Warner. The more you know about dementia, typical behaviors, and ways to deal with them that are positive and effective, the better you will be at this.
Just some basic things that come to mind -
TV is not a great idea other than for maybe the occasional "movie" event(maybe an old Hollywood musical with lots of colour, movement and familiar music). TV causes people to sit and zone out, so they are not interacting and moving around. Worse, they may nap, meaning that they will not sleep as well at night. People with AD also can't tell the difference between fiction and reality, so they may be very upset by things they see on TV (i.e. if they see war on the TV, they may not realize its just a show).
Someone with dementia cannot learn new things -- with assistance they can do things they have always done, so build on things they may have done in the past. Keep in mind, the less steps to a process, the more likely they can be successful. If the activity appears frustrating, stop. Do something else. Come back and try the activity again later. Watch for signs that the person needs a break from an activity: restlessness, withdrawal, increased hand movements, loudness, looking away, or frowning are all signs a break may be needed.
Most A.D. patients are aware of their memory loss and failing in a simple activity will only add to their frustration. Activities that are short, simple, and have few verbal instructions will work better. Keep them simple. Because the person with A D. has a reduced attention span, the optimum time for any activity is from twenty to thirty minutes.
Try to distract the person from undesirable activities such as wandering. Never startle, touch suddenly, talk in a loud voice, or argue. Secure the person's attention by saying their first name followed by a short clear instruction on what you want them to do. Another strategy for helping the person is to walk with the person so that you can walk them in the direction you want them to go.
When explaining how to complete a task or activity, always give specific instructions. Use simple language. Give one direction at a time and then wait for a response before proceeding to the next request. Wait longer for answers. If necessary, guess what the person is trying to say and then ask them if that is what they meant. If the person does not respond, repeat the instructions in exactly the same words. If still no response, demonstrate the activity or start the first step of the process for him/her. For example, when instructing during meal-time, you might put the spoon in the individual's hand, place your hand over hers, scoop the food onto the spoon, and lift it to her mouth -- many times the individual can continue from there.
Try to keep the same schedule every day. You can vary the types of activities, but do not vary the time when you have the activities. Try to minimize choices. You or I might like options and variety, but making decisions is overwhelming for the person with dementia, as is novelty and variety.
Never insist that a person with AD know where he is or what day it is. This type of reality orientation often causes agitation. Same goes for arguing, correcting, etc. They will see it as a putdown, and it doesn't help improve their orientation one iota. They really can't remember. They often also have huge problems with words - they may hear what you are saying and have no idea what it means, or if they do, they can't respond verbally in any way that makes sense. Very frustrating for everyone.
Watch for Illness as part of the dementia team - signs the individual is sick or injured, such as limping, not eating, physically looking ill, etc. You will find that quite often when a person is sick, they may not have typical symptoms, or complain - the first sign may be that they are more foggy than usual. Even a silent urinary tract infection that no one realises is there can cause the person to seem like they are in a stupor. - so make sure you watch for changed behavior and tell other staff.
Nancy Mace, the author of the 36 Hour Day surveyed 346 day-care centers nationwide and reported that the most successful activities with victims of memory loss were those which:
Take advantage of old skills
Offer social interaction (sing-alongs, pets, visits from children.)
Allow considerable physical activity (physical exercise, active games, walks and outings)
Support cognitive functions (reality orientation, reminiscence, and listening to music)
In the survey, the following specific activities were identified as being most successful (those which participants seemed to enjoy most):
Sing-alongs
Active games
Physical exercise
Outings
Walks
Listening to music
Reminiscence
Reality orientation
Visits from children
Visits from pets
Hope this helps. I'm sure the books will really spark lots of ideas for you.
