Mid to Late Stage Alzheimer's Disease

caring for someone with Alzheimer's disease can be a very challenging experience for caregivers as the disease progresses different areas of the brain are affected people in mid to late stage Alzheimer's may have difficulty expressing their needs and words may be less able to reason or may be unaware of what is socially appropriate caregivers who are the most successful are those who can be accepting and can adapt spontaneously to unpredictable situations caregivers with a healthy sense of humor do the best the ability to laugh things off creates a playful atmosphere that is good for the caregiver and the person with Alzheimer's successful caregivers also seek outside help through support groups respite care and spiritual nourishment regular exercise a good diet and plenty of rest are important for caregiver wellness hello I'm Marian Karpinski and I'll be your host in this program we will focus on the mid to late stages of Alzheimer's the disease affects people differently and because each situation is unique there is no single solution that will work for everyone we will explore some typical issues that occur in the mid to late stages of the disease it will help you to find solutions for your own caregiving situation there are a number of changes that occur in the brain that are reflected enough in the behaviors of the patients so a number of abnormal substances get laid down in the brain tissue and they infiltrate the brain tissue when the brain gets sick and then brain cells actually die and if you look at a brain of a patient with Alzheimer's disease over time and actually shrinks so the brain melts away and there's sexual loss of brain tissue and the the memory centers shrink first they get sick first and and the memory starts to deteriorate and then the degenerative process spreads out to the other thinking parts of the brain it spreads out to the other higher cognitive centers of the brain the parts of the brain that do all the things that make us human so as as the disease spreads then these other mental functions are lost the ability to use and understand language deteriorates as the language centers whether away the ability to organize spatial relations in the mind weathers disappears as the the brain tissue withers away so for example you have a mental picture of your neighborhood and you can find your way around your own neighborhood when you're when your mind is intact you have a mental picture of the inside of your house but as as the disease progresses and these these sort of spatial centers of the brain degenerate people lose the ability to find their way around their neighborhood eventually when when the function is is severely damaged they lose their way to ability to find their way around their own home in the later stages of the disease people often have trouble even spatially organizing a table or a plate in front of them finding exactly where a chair is that they're going to sit down in their perception is is profoundly impaired and family members often think oh the person has a vision problem right they can't they can't see they need to go see an eye doctor and and the families are correct that there's a vision problem but it's not in the eyes it's in the brain it's in these spatial and visual centers in the brain one of the other functions that deteriorates later in the in the course of the disease is the ability to sort of regulate your own social behavior we often think of that as a function in the frontal lobes and as the disease progresses from the memory centers to the frontal lobes sometimes people's ability to regulate their own impulses or to behave you know in a socially appropriate manner is sometimes effective the disease doesn't progress in the same way another person some people develop profound changes in their personality and behavior due to the specific way their disease spreads even with the loss of language and other functions some people still have the same personality and display a keen sense of humor well into the late stages of the disease people who have Alzheimer's disease on an average live eight to ten years after the onset of symptoms the disease does not attack vital organs such as the liver heart or kidneys because most people with Alzheimer's are elderly they will pass away from some other illness they have or an age-related condition common causes of death are infections such as pneumonia or complications after a fall some people simply stop eating at the end it is usually a very quiet and peaceful passing people in mid to late stages of Alzheimer's are not able to initiate activities on their own it's as if their Start button is broken left to themselves they will often sit and doze most of the day it's our responsibility to provide them with activities that they enjoy trial-and-error is a common approach to activity planning but it is not the best way to go about it finding out what the person enjoyed in the past is important because then you can plan activities that are more likely to be meaningful if the person is unable to tell you consult with family members or close friends even if the person can no longer do a specific hobbies such as crocheting she may enjoy doing something related such as winding yarn looking at pictures of crocheted objects are watching someone crochet one on one activities work better than group activities in the mid to late stages of the disease however being with others in a group setting is still important it adds richness to a person's life even if she does not appear to be participating on some level she may still enjoy what's going on around her even though her facial expression remains the same keep in mind that the purpose of the activity is for sheer enjoyment of the moment it's not about her completing the activity or following your directions for example if in the past he loved to garden gather together a pot soil some seeds in a trowel he may not know what to do with the materials and you may have to guide his hand by holding or touching the soil he can experience the smell of it the feel of it in his hand all the things that brought him joy in the past the activity may turn out to be something quite different from what you expected the seeds may never be planted the soil may never get into the pot becoming a finger painting instead the result is unimportant as long as the person was engaged if he enjoyed himself the activity was a success patients with Alzheimer's disease mild moderate severe they're invariably going to forget these pleasant activities that doesn't mean that they're not worth doing you know even enjoying them in the moment is worth doing and I think that some of the emotional benefits of engaging these activities hold over even though the person can't specifically remember what it is that they're feeling better about sometimes caregivers interpret an activity as a failure and decide never to do it again they will say well I took her to the park and she just sat there getting someone to talk laugh or show a positive response doesn't always happen in the later stages if the person stayed with you and didn't want to leave that is proof enough that it was enjoyable in some way people with Alzheimer's become less able to tolerate commotion or excitement as the disease progresses shorter visits that focus on the person with Alzheimer's work best being attentive for 15 to 30 minutes can be more satisfying and less stressful than an hour-long visit at large gatherings such as weddings picnics or holiday dinners the person with Alzheimer's can become overwhelmed or feel isolated that doesn't mean you never include him or her at another family gathering instead select a time during the event that will be relatively calm and relaxed if it's a holiday dinner or picnic for example have her join the group just for dessert family members can give more undivided attention during this short time it is unrealistic to expect someone with mid to late stage Alzheimer's to attend an entire function it is important to respect her request to go home choose one individual to be a companion during the event when she has had enough this companion can take her home many older people enjoy taking naps during the day napping provides needed rest and a break from the stimulation of daily activities if naps interfere with nighttime sleep experiment with shorter nap times until a balance is found where the person naps is very important the bed is not a good choice because when he wakes up from a nap it may seem like morning causing unnecessary confusion a nap location such as the living-room couch or recliner makes it easier for the person to understand that it is the middle of the day not morning the person with Alzheimer's can no longer plan his or her day as we create each day schedule it's important to balance the kinds of activities that fill the day one of the tools you can use to help balance the day is a 3 s's that stand for stressors soothers and signs of trouble brewing the stressors are those unpleasant activities or events that are known to cause education anger or anxiety bathing taking medication and dressing are three common stressors soothers are their known activities that relax these might include singing looking at old photos or eating food or candy it's important to find out what suits the person the third S stands for signs of trouble brewing these are signs that the person is becoming upset a raised voice crying a furrowed brow or fidgeting are common signs use a soother to keep the situation from escalating besides the 3 s's there are core principles that work throughout the disease one core principle is to stop when the person says no rather than force your will well here's some thoughts about when you're in the thick of a bad moment if for example somebody's you have them in the bathtub even and they have become very irate or kicking or hitting or cursing or obviously there eating this it's tempting to stay right there and try to hurry up and get done I think I really do think most of the time you're going to be better off if you you move away take your hands off step back you may even need to get around the corner so the person can't see you anymore to get rid of the the visual antagonism of you persisting on something that that person really doesn't like so so stepping back stepping away moving out of sight let that moment settle down and then do something that you know usually is irresistible whether that's singing or joking or offering chocolate I don't care that they're in the bathtub they can still eat their favorite thing whatever that is to soften that it may be that you need to holler for somebody else if you have the luxury of somebody else around and have that person come in and and talk about the baseball game just let that heated angry moment dissipate let it dissolve let it go away I don't think it's wise to work through it it's it gets so big and bad that it doesn't usually end up where you want to end up remember even though the person with Alzheimer's cannot always tell you what she wants or needs with words the behavior is telling you the behavior doesn't come out of nowhere something triggered it it could be a memory the surroundings or your behavior or attitude when a difficult or awkward situation occurs the person with Alzheimer's is doing the best he or she can rather than trying to force a change focus on the part that you or the surroundings might have played is the room noisy cold or too bright was I trying to talk while the TV was on did he become confused because he couldn't tell which voice to listen to did my own irritation trigger the uncomfortable situation ask yourself was it my tone of voice the speed of my movement or something else in my approach the person with Alzheimer's can feel and may react to your anger anxiety and patience or disappointment remember your mood is contagious another core principle is to respect the person's feelings and whatever concerns he or she may have followed by two other techniques called stalling and distraction it's important that the person feel heard even though you may feel that the concern is unrealistic it must still be acknowledged the best way to address a concern is to agree for example if she says I want to go home agree with her by saying yes going home sounds good to me I'd like to go to stalling and distraction can then be used to reinforce the experience of being heard but first I need to get something to drink please keep me company come with me then talk with her about home come up with every idea you can think of that helps her to experience the enjoyment of home look at photos ask the person to tell you what she likes about being home remember that acknowledging the person's concern establishes trust and it's the trust that allows stalling and distraction to work using stalling and distraction without acknowledging the person's concern is disrespectful and may create agitation another core principle is to follow the lead of the person with Alzheimer's she has always given you clues about likes and dislikes when you follow the person's lead you honor her pace and level of stamina rather than making her conform to a rigid schedule one person may enjoy getting up early and being dressed for breakfast another needs more sleep and likes to eat in her pajamas a third may not have the stamina to tolerate a series of personal hygiene activities at once it's up to you to follow his or her lead and create an individualized plan of care that allows the person to be happy repetitive questions such as where are my babies occur early in the disease as time goes by the question may be a word or sound something like babies babies babies earlier in the disease you could soothe her concern by telling her that the babies are sleeping she would be satisfied understanding the importance of letting baby sleep now with fewer functioning brain cells a different technique is needed you still want to let her know that her concern is important but now she may be more comforted by holding a baby doll or stuffed animal something that she can snuggle with help-help-help is another common repetitive crying out it may involve much more detective work to find a soothing solution for this concern here are some things to consider a cry for help may come from loneliness music or voices on video tape can help the person who feels alone if the discomfort occurs at night it may be that he or she is uncomfortable in bed alone many elderly never slept alone as youngsters they shared a bed with siblings and then later with a spouse a body pillow something that is as big and warm as another person may help relieve the feeling of loneliness repetitive calling out may be the result of pain the person can't tell you that he is she hurts or where it hurts providing routine pain medication may be helpful familiar rituals from the past can be soothing especially at the end of the day which is often an uncomfortable time for someone with dementia did he or she pray or have warm milk and a snack before bedtime trying one of these rituals can help to smooth over that uncomfortable feeling what brought the person joy before he or she had Alzheimer's disease what values were important was she a religious person knowing the person's core values can help you find ways to make that person feel happy and safe I need to know what that person did who that person liked what they did for work what they did for leisure what were their values was this a very religious person was this not a religious person did they like to drink you know did they like to do a toast in a drink or were they a teetotaler those fundamental core values if you will are going to be essential there was one man who was a boss he'd always run our huge factory had hundreds of employees and when he was in a group setting where there was lots of people around whenever people which for him because he now had this disease when he was in a group setting often it was pretty casual it was a social setting or it was in a care setting where he went for the afternoon so it was it had a very frivolous feel fun singing cake cookies juice and the more fun it got the more irritated and annoyed he got he would shake his hand at people because he was the boss and he wanted things to snap along and he wanted people to stand up when he came by and once the people who were taking care of him figured out that of before he got the disease a core value was a level of respect and response to his presence that he was no longer getting when they learned that when he walked by it was good to stand up he just stood up and greeted him how you doing sir and you called him sir then he settled down without knowing the before you couldn't make his irritated cantankerous way leave you have to know the before and the after and the before takes a fair amount of detective work there isn't one technique that will work every time or for every person a technique that works for you may not work for another caregiver or you may feel uncomfortable trying a certain technique that's why it's important to search for and share ideas with others it is critical to have a variety of ideas in mind to try when the situation comes up you may not always get an immediate positive response but it's important to be patient and to keep trying because people with dementia are so limited in their ability to express their needs with words and they do so much of it through behavior as a caregiver you are their first line of defense against pain they depend upon you to recognize pain and see that the pain is adequately treated because they really don't have the ability to do that for themselves one of the things when you're assessing for pain is the first step is you have to be at least aware of the possibility of pain you have to at least think about pain as being a possibility for this person because of their behaviors or just because of their history so the first step for any caregiver is to be thinking about the possibility that this person could be experiencing pain Alzheimer's disease causes a great deal of emotional pain but does not cause physical pain in and of itself most people who have Alzheimer's are elderly they may have medical conditions that can cause such as arthritis stroke diabetes and even constipation people with Alzheimer's experience pain the same way as you and I uh three teen can cause other health problems such as difficulty sleeping loss of appetite weight loss and refusal to participate in activities people with Alzheimer's who can't express their pain in words may show behavioral symptoms such as repetitive crying out moaning resistance to care withdrawal restlessness or physically striking out during care besides behavioral changes there are other ways that they show pain when you're in the process of doing care sometimes what we see is that people will do guarding where if they have a painful joint they'll they'll sort of hold it sort of tight and close or prevent you from touching it or moving it or they might actually sometimes we've seen people where they draw their legs up as a way that is sort of an expression of pain sort of like you've heard the term people are writhing in pain well a person with dementia can't do a fast writhing particularly in the end stage of the disease but if they're pulling in a lot and things like that that could be an indication that they're having some pain some caregivers say at the very end stages they can tell by the facial expression and how how it looks or even eye blinks some caregivers have said that they can see that the person is having pain because they do a more rapid eye blink and that in the end stage that may be one way that they express pain so you can see the better you know the person the better you are going to be able to be their advocate in identifying pain and then being really pushing to see that that pain gets adequately treated in order to assess pain it's important to know the person's medical history and to ask if he or she is having pain it helps to touch the area when you ask for example if you know the person has had an arthritic knee you would touch the knee and ask if it hurts when you feel that the person may be experiencing pain reported to the physician or nurse the best way to treat pain is around-the-clock on a routine basis sometimes a mild pain reliever is enough if you believe the person is having pain and yet after trying a mild pain reliever you observe no change don't give up and assume that pain is not the problem report your findings to the doctor or nurse the person may need a stronger medication for effective pain relief there are a lot of things that just the caregiver can do that can really reduce pain just in the course of daily activities again any of you that have any arthritis know that those joints can be very painful and if they're moved too suddenly or to pulled on too much it can cause a lot of pain so how the caregiver treats people with pain makes a big difference one of the things is again to take if you have a joint that you know is painful is to move it very carefully and slowly rather than just moving it very fast so that's a very basic thing the other thing is that if you're going to do something to a person that you know has caused them pain in the past it's better to give them an early warning so for example if you're going to move a person's knee to say Helen we're going to move your knee now and then you move the knee that's called an early warning and that lets the person know that something painful might be occurring before happens and it we've seen that it really does make it easier for them to go through this experience that they know has been painful the other thing is that if in the course of your caring you do something that causes the person pain so much when you move a joint that's painful sometimes shaving can be a painful thing if you happen to cut somebody it really helps if you apologize to the person say I'm so sorry I'm so sorry that I hurt you I'll be more careful and just those simple words and that kind of acknowledging of their pain and letting them know that you as a caregiver or concern about that can do a great deal to relieve the anxiety that goes along with with pain for any of us the loss of bladder and bowel control and toileting problems are to be expected in the mid to late stages of the disease a urinary tract infection may increase urgency and the need to use the bathroom the person may no longer know where the bathroom is or how to use it he or she may not recognize it sensations involved in needing to go to the bathroom and what it takes to get there on time getting to the bathroom requires complex thinking and with the loss of brain cells that kind of thinking is no longer possible an understanding of acceptable social behavior is also gone as a result the person with Alzheimer's may urinate or defecate in places such as the heating vent closet or planter here are some ideas that may be helpful if the person still has language skills you can use signs that lead to the bathroom keep the door to the bathroom open so that the person with Alzheimer's can see the toilets being able to see the toilet has been shown to be helpful track and record any episodes of incontinence for several days to look for a pattern this information can help you anticipate when she is likely to need the bathroom taking her to the bathroom 15 minutes before can help prevent accidents incontinent briefs help to keep clothing dry and wetness away from the skin when there is loss of bladder or bowel control even with this increased attention to toileting the person may continue to use a favorite spot if that happens it's important to make the place safe and sanitary you can place plastic on the floor cover it with the chucks then cover the Chuck's with a layer of absorbent material kitty litter works well this method makes cleanup easier remember the person with Alzheimer's cannot learn new information trying to force behavior changes or punishing is cruel and does not work this is a difficult situation to deal with but when you realize that the person is doing the best that he or she can and is still functioning independently it may be easier for you to accept the way that people with Alzheimer's disease respond to the human need for intimacy and sexuality varies from person to person some may respond in a hyper sexual way while others may lose the ability or desire for sex completely as the disease progresses the person with Alzheimer's may no longer recognize a life partner of many years he may forget how to have sex or be aware of what is socially appropriate the person's behavior becomes more instinctual adding to the difficulties of the reactions and feelings of people around the person with Alzheimer's the spouse or partner may be particularly affected when faced with constant demands incontinence and hygiene issues making it difficult to be both caregiver and lover often there are feelings of shame or failure and sex is a topic that many find embarrassing to talk about it is important to remember that medical conditions other than Alzheimer's and various medications can decrease sexual desire and cause men to become impotent the primary physician should be consulted as there may be changes in medical treatment that can correct the problem sexually inappropriate behavior is not a frequent problem sexual behavior might be about sexual drive or it could be about the need for connection as caregivers we must look at what's behind the behavior understand that there is a need being expressed and try to meet that need some behavior can be better understood by learning about the person's past was there sexual abuse in the past that may explain her physically striking out at male caregivers how did he or she express and receive affection or intimacy in the past these details can help you develop an individualized plan of care sometimes sexually inappropriate behavior is a signal that the person needs attention or reassurance showing an interest in the person by sharing memories or a meal together can help fulfill this need sexual preference does not change when someone has Alzheimer's disease people remain either heterosexual or homosexual touch is a basic human need that begins in infancy it is so vital to our well-being that babies who are not touched and held do not thrive the need for touch does not go away when someone has Alzheimer's meaningful touch such as hugging holding hands sitting close to someone gently touching the person's face or rubbing lotion on the hands and arms is soothing and comforting it provides a sense of closeness and connection that is different from the kind of touch provided during personal care it is important to allow meaningful touch the reason that I talked about it's important to allow it is I have seen cases where some of the 24 hour caregivers would say no I don't like that kind of touch and the response was no don't touch me at all well that doesn't work for the person who has the dementia it doesn't get rid of the need they have a very human need to be connected and that need will still be they'll still try to figure out a way to address it and it can get less and less acceptable because it becomes more intense a need so we have to do something to address it as opposed to just discourage it there's no cages to make it stop and so that is why as opposed to saying no don't touch this is you know forget it I will allow the hands to come close and allow the person to come close and then and then just make it be you know something that's comfortable for me a lot of times I'll hold on to both hands because I don't want those hands going places that make me uncomfortable but I get both hands and snuggle them up or or I'll take both hands and put them on my shoulders or some way that I can still do a snuggle still be close but not uncomfortable for me and not completely withholding the intimacy from the person who's asking for that is a caregiver you can avoid triggering in a a touch or speech by maintaining professional behavior be aware of how you communicate and position your body when providing care flirtatious comments reaching across the person's body or bending over without awareness may expose you to inappropriate touch or response sometimes caregivers will say he knows what he's doing however you cannot have the same expectations for the person with Alzheimer's that you have for someone without dementia with that in mind it may be easier to respond compassionately rather than in a judgmental way undressing in public are touching the genitals may appear to be sexual but it could be caused by tight or wet clothing skin irritation the need to use the bathroom or bladder or prostate problems people with Alzheimer's may release sexual and emotional tension through self stimulation boredom or loneliness can increase the desire to masturbate distraction increased activities an individual attention can help address loneliness and boredom if masturbation occurs in a public area rather than discourage the behavior direct the person to a private area never shame tease or scold sexually inappropriate behavior sexual identity is important to our sense of self treating a person is a man or woman rather than as a non-sexual being is vital to self esteem activities that reinforce gender identity such as manicures or hairstyling playing sports or allowing him to shave can support a person's sense of self treating each individual with respect such as using care not to over expose the person's body during dressing or bathing helps preserve self esteem caring for someone with mid to late stage Alzheimer's disease is very challenging as the disease goes on you may feel uneasy about what the future holds regardless of this uncertainty you can still enjoy parts of the experience that are wonderfully fun and precious things like like just being together sitting next to somebody up on a chair with arms around and having that person just lean their head in and it'll just be so dear and the end wanting to just stay connected that way there's lots and lots of very precious moments a lot of them come with no words the words are hard for a person who has this disease to come up with but but the connection with people the wanting to be together I have seen where you'll have one person who's quite frail trying to reach for something that's out of reach and another person who has the same disease but just a skosh bit more limber be watching and and slowly make their way over there and get what was just out of reach and hand it to them that kind of it's just so precious where you know even though the words are hard for them to find are impossible but that that's still being observing and still participating and still wanting to help somebody else that's magic when you see it there is a piece of being um not inhibited socially that's an absolute blast you know normally you wouldn't walk up to somebody right after lunch in the middle of a room and waltz around you just wouldn't waltz about but that's the kind of stuff that is delicious and fun and spontaneous that is way easier to do with people as the disease has progressed than it is in the beginning when there's still a bit of inhibitions about is this the right place or the right moment or the right person all that rightness goes away when the social inhibitions go away and then there's a lot of room for play and spontaneity the freedom that occurs in the mid to late stages of the disease can be a real treasure these moments of connection are there for you to discover and cherish you you

Channel: All N One Home Health

Views: 325,658

Keywords: Alzheimer's Disease (Disease Or Medical Condition), Health (Industry), Home Health

Id: _kmE0HHpYkc

Length: 42min 7sec (2527 seconds)

Published: Thu Nov 12 2015