At this stage, people with dementia are emotionally perceptive, but very inwardly focused. Family members are no longer recognized. Or they are mistaken for friends or family known in earlier years. Confusing the present with the past is common. Yet they are still aware of physical sensations and are sensitive to the current environment.
An emphasis on comfort and calm
The emphasis of this stage, and in the final stage, is to keep the person you care for feeling loved, known, and safe. That starts with addressing the senses.
People in the late stage of dementia tend to be very aware of all their senses, so they find enjoyment in
happy or soothing music
clothing or objects that are soft to the touch
affection and gentle massage
In this stage 24/7 assistance is required.
Instinct is a primary driver A person with late stage dementia no longer has control over his or her environment. But he or she will be very perceptive emotionally. If you exude love and show caring with your body, face, and tone of voice, the person you care for will likely respond in kind. When he or she becomes anxious about something, even if it seems ridiculous, show concern. You need to demonstrate that you are trustworthy, that you are an ally. If the person you care for becomes anxious, you can often distract him or her away from the cause of concern and substitute a positive, engaging activity.
Communication is non-verbal Communication is severely impaired in the late stage. The person with dementia will have difficulty understanding what others are saying. He or she will likely talk less and less. What’s said may sound like nonsense. But listen for possible symbolic meaning. “I’ve been robbed” is a poetically accurate depiction of memory loss. “I want to go home” is often not so much about location as a longing for the sense of comfort that “home” represents. Studies have been done during which elders with dementia free associate, draw, and dictate their thoughts. They can be surprisingly insightful.
Music as a universal language. If the person you care for seems to have retreated into their own world, try a little music as a way to connect. Tunes from their youth will often bring a smile. Favorite hymns may even get someone singing who has not talked in quite a while. Try not to over-stimulate. Soothing music is best for starters. If that seems to be well-received, then you can build up to more rousing melodies. You may even be able to get your loved one up and swaying to the music for a little movement and body connection.
Emotional outbursts. Loud noises, cursing, refusing to cooperate, and even aggressive behaviors are usually a sign of pain or distress. It can be physical pain or emotional pain. Persons in the late stage of dementia usually cannot tell you what they are feeling. Look for nonverbal signs of physical pain, such as groaning, a furrowed brow, rapid breathing, or grabbing or clutching a part of the body. If there is no obvious physical problem, it may be something internal, such as a bladder infection. It’s wise to check with the doctor if outbursts are a problem. There may be a medical condition at the root of it. Or the source of the problem may be in the environment.
Look for triggers. Usually there is a purpose behind distressed behavior. Think about what was happening just before your relative did something strange or difficult. Was there pressure to get something done in a hurry? Did you ask him or her to do something that was perhaps too complicated, had too many steps? Or think about what need your family member might be trying to fulfill. For instance, wandering or restlessness may reflect a need for physical exercise. Anger or agitation may be a response to feeling out of control of a situation.
Use distraction techniques. One advantage of forgetfulness is that you can use the short attention span to distract your relative from a triggering situation. Perhaps there is a distressing program on the television. Maybe he or she was frightened by a noise or a picture. You can either remove the distressing object or suggest another activity and then take your family member to a different room to complete it. Distraction works best if you acknowledge your relative’s feelings first and establish a loving, nonverbal connection. Hold his or her hand, touch a shoulder reassuringly, and make eye contact. Then you might say something like, “I can see you’re upset. I would be too. Let’s go outside and check on the bird feeder.”
Accommodate their preferences. It’s easier to let your relative do what feels natural to them than it is to try to force them to do things differently. If carrying a baby doll gives purpose and a sense of meaning and comfort, then let the doll be part of the family. Your creativity and flexible responses can do much to generate an environment that feels safe and loving to a person who is confused and potentially scared much of the time.
Find “useful” activities. Even people with very clouded thinking like to participate and feel like they are helping. Folding towels, sanding wood, sorting coins, stringing beads, or sweeping the walkway…these are all familiar activities that can be comforting and very absorbing for a person with dementia. Plus time spent on these safe activities gives you a break. (Hint: The activity does not have to be literally useful. You can take the hamper full of folded towels to another room, and jumble them up again. Then come back and ask if your relative can help you by folding this load of laundry.)
Use short sentences and show rather than tell. As language capabilities diminish, your loved one can get easily confused. If you want your relative to do something, break it down into simple steps. Or better yet, show your relative what to do, one step at a time.
Wandering. Your relative may exhibit restless behavior. This can include walking aimlessly for hours. Or he or she may continually talk about needing to get home. Your family member may be searching for something and be unable to say what it is. Putting up signs for the toilet, the kitchen, and the closet can help your loved one stay oriented. Getting regular exercise can burn off extra physical energy. If you are worried about safety, something as simple as a “stop” sign on the door or a yellow ribbon across it can keep your relative inside. Plastic “child-safe” doorknob protectors can be useful, as can a home security system if you are worried about nighttime wandering outdoors. Many people with memory problems have trouble spatially. Sometimes a black mat placed in front of the door will be mistaken as a large hole and dissuade a person with dementia from crossing over it.
Following you from place to place. This is often called “shadowing” and it can be very unnerving. As your family member becomes less capable, he or she will want to stay beside you. Your presence provides a sense of safety and security. Providing verbal and nonverbal comfort and reassurance can help. Also, distracting your relative with an engaging activity can give you some moments alone.
Mealtime problems. Although your relative may still have an appetite, he or she may have trouble with the mechanics of eating. Using a fork or knife becomes too complicated. It may be better at this stage to change to finger foods. And a “tippy cup” or one with a built-in straw may be easier than a regular glass or cup for fluids.
Marsha Raines provides much-needed assistance navigating a complex system during high-stress times. She is excellent at what she does. She asks important questions, listens, is efficient and very dependable.
Our family worked with Marsha Raines of Aging Well Rochester at a crucial moment when our mother was experiencing a decline in her physical capacities after living on her own for most of her adult life. Marsha was our guiding light throughout the process: explaining, with compassion, the various options for Mom; guiding us through the application process for both rehab and long-term care; and ultimately, settling Mom in at her wonderful new home where she is safe, comfortable and happy. I wholeheartedly recommend Aging Well Rochester!
Was connect with Marsha from Aging Well Rochester while searching for assistance with understanding the system and what is needed for elder parent. Marsha provided me with information, guidance, and took the time to explain differences between assisted living, independent living, and what questions to ask while interviewing for a new home for my mother. Valuable information. Marsha continues to follow up to assist if needed. Very pleased and so glad found Aging Well at a crazy time.
Coming to grips with a parent's decline and figuring out how to meet their needs can be a terribly stressful ordeal. Marsha and her team made it vastly less so. Marsha's calm demeaner, wisdom and professionalism were invaluable during the 8 months during which my father's needs were rapidly changing. She has a wealth of knowledge about resources available in the community and was able to bring them to bear quickly. I will be eternally grateful for the emotional support she provided during the entire journey.
At a time when you don't know what you don't know, Marcia knows! She asks the right questions, narrows the choices, and provides direction. She definitely helped us feel more confident as we moved forward, and she was thoughtful enough to follow up to be sure we were making progress. Highly recommend.
Marsha and staff were exceptional in their guidance though the difficult and unfamiliar journey of finding quality care for our aging parents. For over three years, they were able to anticipate needs, advocate for our parents, and provide support for them through various crises. We are so thankful for their expertise and compassion through all the changes. We highly recommend Aging Well Rochester to anyone seeking help with aging loved ones.
I just want to thank Aging Well Rochester for their assistance to complete an urgent PRI for my stepmother and also one for my father in case we needed it. The nurse went above & beyond to do that for us as we fortunately found a bed quickly for my stepmother. All went well & she is now receiving wonderful care at St. John's Home. Thank you Marsha and your staff - you made a difficult situation much easier.
Marsha Raines was incredible--responsive, caring and very knowledgeable. She helped me navigate options and provided excellent counsel. I highly recommend Aging Well to you if you are facing a difficult and emotional situation with a loved one who needs ongoing medical/rehabilitation placement and services. Marsha exceeded my expectations. Christine L.
Our initial consultation with Marsha Raines was very informative as it provided our family with a starting point concerning a long term care plan for our aging father. Her knowledge, experience and compassion allowed her to assess where each of us were in dealing with the emotional stress of the situation and provide recommendations to get us moving in the right direct with a long term care plan. Marsha helped us narrow our focus to ask the right questions regarding our next steps in care for our father. Thank you Marsha!
We were exceptionally fortunate to have Marsha Raines of Aging Well Rochester assist us in placing my wife in an appropriate facility. She guided me through all the paperwork, answered every question I had and resolved every impediment that we found in the process!Thanks so much Marsha!
We received great service from Marsha. Highly recommend. Navigating rehab and long-term care can be daunting. Marsha breaks down the ins and outs and helps bring the family to consensus on the best next steps.
Our family reached out to Aging Well Rochester for an understanding of the options and to seek clarity as to next steps for our elderly father regarding his future care. Marsha provided our family with the assistance, guidance and resources necessary to make a decision that was best for our father. Marsha's response to e-mails and phone calls was always in a timely manner and we truly appreciated all of her knowledge and expertise and would not hesitate to recommend Aging Well Rochester!!
Marsha understands the world of aging and the decisions that need to be made. She has both the education and experience to navigate a complex system to secure the best care as well as the expertise to guide throughout the process. My wife and I are grateful for her depth of knowledge, experience, skill, and compassion. We plan to use her as a resource for years to come!
Marsha Raines and her team have been a gift to my family. I'm on the West Coast, and her local knowledge has been extremely valuable in locating care options and knowing what to look for. Her direct style does not shy away from talking about tough issues, and in fact, makes it easier to devise a care plan. Marsha is a gem.
I truly appreciate the advice Marsha has to share. She has a great way of putting things into perspective and knows her stuff! Thank you for the advice, help, and input while trying to figure out the next steps with my parents.
I hired Marsha Raines to help me find the best Nursing Home for my husband. She was professional, quick to answer any questions I had, told me all I needed to do, and quick find him the right place. She was extremely helpful and compassionate with this difficult undertaking . I highly recommend anyone searching for a home for their loved one call Marsha before doing anything else!
Marsha level of expertise in this field has been tremendous. She explained the changes that occurred in the nursing homes industry. She took the time to research nursing homes for me and this afforded me time to focus on my mother's medical needs. I found Marsha to be resourceful and committed to helping me through this difficult time. I would highly recommend her service to you.
We moved our mom to a memory care residence, and in just a few short weeks we realized that it was not the right place for her. Distraught that we had made a horrible mistake, we needed help. I contacted Marsha and she met with our family to help sort things out. She took our concerns seriously, consulted with other industry professionals to assess our mom, and found us a better place for her. Just two weeks later we were able to move mom to a wonderful residence that cares for her properly and gives us all peace of mind. We are so grateful for Marsha and her ability to navigate the challenging world of eldercare on our behalf.
My husband, Bradley, needed to be moved to an adult home due to my inability to continue caring for his needs. I had no idea where to turn until Marsha Raines name was given to me. It is very difficult to navigate this process while you are under stress and her kindness and actions got the process started making it much less painful. I highly recommend her for her insurance knowledge which was extremely helpful to me.Mary Ellen Hindson, Rochester, NY
Marsha Raines assisted our family through the most trying time of our lives with Mom. She was extremely knowledgeable about placement, finances local care available and placement. She was personally involved in contacting the care facility to assist in mom getting placement.Her recommendation of the Presbyterian Home was spot on. All grants recommended came through and we were able to continue her care until she passed away.Thank you Aging Well. I would recommend her services highly.
My parents needed more assistance than I could give working full-time in another state in 2015. They were facing medical issues and needed to move out of their beloved home of 60 years. Since then, Marsha and her team have been instrumental in supporting my parents, and me, through good times and bad. They arranged movers, set up and attended doctor appointments, arranged for aides and companions to assist my parents in living safely and independently, and checked in on them to be sure they were comfortable and happy. Marsha has been an incredible resource to me, providing information and advice when needed in a direct yet sincere manner. I feel relieved to know that Marsha is there to help when I can’t be, keeping me informed, and checking in when needed. She is an incredible resource and advocate for the elderly and their families.
I contacted Marsha two weeks ago. I quickly learned that a PRI, exam to determine the level of care was needed to go into a nursing home. I was given 10 local agencies that could do it. I chose "Aging Well". Marsha was so personable on the phone, getting all the fact. She was able to arrange the exam in 5 days. The nurse showed up on time and my aunt chatted away. Two days later I got an urgent call from my aunt begging me to find her a new place immediately, she had a horrible weekend and wanted out. So, I called Marsha back that same day and asked her to take our case on and help get my aunt placed ASAP. She was pleased to help. She sent me the 3 applications to the facilities my aunt wanted by the end of the day. She kept in close contact with me the next couple of days with words of encouragement while I scrambled to get the information. I submitted the first one. Marsha personally went into the facility and spoke to the intact person giving her more details of my aunt. 5 days later, I moved my aunt into the facility she wanted. Here is a photo of her reaction. Marsha is focused, very knowledgeable, explains the process well, upbeat and is very encouraging. I would work with her again in a heart beat. She is the best.
I have been working with Marsha since 2008 planning for the aging process and various transitions for my parents.She has always been incredibly helpful, knowledgable and available. Over the years she has grown the organization, but still maintains that level of support. Her manner is caring and supportive yet direct, a quality that I have found very comforting and helpful during stressful transitions. I can't recommend highly enough.
Aging well Rochester did an AMAZING job of helping my family deal with my experience and Hospitalization with Covid 19. Marsha worked with my children and family and the hospital staff to make sure that I would receive the care needed upon my return home. I can't thank them enough for making this experience as easy as it could be.
Living more than 500 miles away from Rochester, visiting my mother as often as we would like was a challenge. Luckily I found Marsha Raines and her colleagues at Aging Well Rochester. Their visits to my mom were so frequent and warm that the staff at the nursing home thought they were family! Actually that's how we think of them. In addition to the care and support for my mother, the feedback and advice Marsha and her colleagues provided us was always timely and helpful. I consider the day I found Marsha to be one of my luckiest. I can't imagine the last few years without Aging Well Rochester! Thank you for enriching my mother's life and ours.