Creating a Caregiver Plan

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Welcome back, everybody, to a new Truth, Lies Alzheimer's episode. I'm Lisa Skinner, your host, and I've done something a little different for you today. I have created a sample caregiver planner. That covers all the different stages of dementia: the early, the middle, and the late. So I've actually given you sample weeks of what you can do on a day-to-day basis for each stage, and these are not set in stone. You can mix and match and change things around, but at least it gives you a example of a planner that you can utilize as you feel appropriate to your situation. So let's start with the early stage or mild impairment stage, and this is a sampling of how you can implement The morning routine, so starts with waking up, some hydration, a light activity, reminders for appointments, and then midday, uh, provide a manageable task, uh, a social interaction, and a short break. For the evening, you want to do a wind-down routine. Don't get up and have them start dancing. That's just gonna set the stage for a restless night. So wind-down routine. Like one of the things that we used to do in our buildings was do a gentle hand massage, either with lotion, unscented or scented for a calming effect. Or without. So it's very, very effective. You want to minimize any overstimulation for that exact reason. I mean, people already who are living with dementia really have kind of lost their circadian rhythm and can't tell night from day. And that's when we see nighttime wandering happen more often and sleep disturbances. You know, they may start sleeping more during the day and, I mean, less during the day and split it up between daytime and nighttime. So overstimulating them late in the day can just really, you know, exacerbate that whole situation. So some of the common triggers that we see in this stage is Developing anxiety about changes in their increased awareness of their own memory gaps, and that's frustrating. Subtle confusion or starting to misplace things and not remembering where they put them. We see social withdrawal or reluctance to participate in things that they may have at one time enjoyed, like maybe a musical concert or some kind of a social activity. So here are some recommended caregiver responses at this stage. Do what you can do to continuously preserve a person's autonomy, independence, feeling that they still have control over things. And you can do this by offering choices. Do you prefer the red one or the green one? Do you want an English muffin? Would you rather have an English muffin or rye toast? If at this stage they should still be able to make a choice, but limited to 2, because more than that can cause overwhelm. Use respectful language. You can use memory aids, gentle reorientation, and reassuring. You can still offer explanations about things. Encourage meaningful activities that are always aligned with their interests, which could vary pretty substantially. And here are some prompts in scripts, sample language. So a morning greeting may be, "Good morning, Alice." Always say their name. "We're going to start with a glass of water and a short stretch. Which would you like to do first?" Now remember, this is the early stage mild cognitive impairment, so they should understand what you're asking and be able to respond to it, but sometimes you're going to have to adjust these this sampling. Here's a memory cue example. Now, you told me, Alice, that you have always enjoyed planting tomatoes. Would you like to look at the photos that I have from your garden? This one is actually from last year. Here is an example of a simple instruction. Would you please help me and carry this mug to the kitchen? Now, if you preface that by saying, would you please help me? I would really, I could really use your help. I would really appreciate your help. We are wired to want to help people and it makes us feel good when we can. So, Alice, would you help me out here? Would you please carry this mug to the kitchen, and I will follow with the next step in a moment. Is that okay? Okay, task pacing and prompt examples. Here are some step-by-step examples to offer choices. Okay, first we're going to pick out a shirt. Then we're going to choose a pair of socks. So, would you like the blue socks or the green socks today? You can hold them up and let them point, or they can verbally tell you. In terms of safety and environment, now make sure their environment is clear and uncluttered and has great lighting. Use doorway labels if helpful. And here are some caregiver self-care tips for you. Take short breaks throughout the day. Rotate the tasks. Join a support group. Document the triggers when you see a change in their behavior and what the effective response or responses were. To kind of turn that whole situation around. You're going to want to keep a journal of these because what works during one situation may not work if the exact situation arises. You might have to have a couple of different options in your tool belt. Okay, here's the middle stage planner suggestions. This would be for moderate impairment. So in your daily structure, you want to make sure that you're structuring routines with built-in safety checks, and you can do this by increasing the use of visual aids and reminders. You can offer more planned activities with supervision. Because some of the triggers during this stage are becoming more disoriented and confused with tasks, becoming frustrated from communication barriers. They're not completely understanding what you're asking, what you're expecting. They may be trying to process more words. You're speaking faster, you might need to slow your speech. The speech rate down, so they— because they now they're going to have a more difficult time processing the words that you're telling them. You might see more sleep irregularities during this stage and wandering tendencies if they're not being supervised. So here are some recommended caregiver responses during this stage. Use and offer simplified tasks. That's gonna vary from person to person. And group activities into separate segments. It's called chunking, making them more manageable and less overwhelming. You can provide hands-on assistance if you see they're struggling a little bit. And then in terms of implementing safety measures, That can include exit alarms, door signage. And then one of the things that you can try to normalize agitation is always still— this is going to apply to every stage— calm tone. They're going to pick up your nervousness, your anxiety, your— if you're in a rush, feeling in a rush, they pick up on that and they emulate those emotions that they pick up from us. Use redirection and validation, validation, validation. "I can see this is upsetting you, so let's try something else." Here are some prompts and script samples that you can use in this stage. Reassurance: during confusion. So here's an example. You're in your kitchen here, and I am with you. We're gonna go step by step together. Very reassuring for somebody with dementia. Okay, here's some language to use for redirection. Okay, let's take a short break right now. "Listen to your favorite song. After that, can we finish the simple task that we were working on? Okay? Is that all right with you?" Again, you're giving them back the control to agree. That's very important. If they ask you a question, a good response is, "Hey, that's a great question." And Here's a straightforward answer to respond: Give them a brief explanation in response to their question. For task management, break the tasks that you are providing or offering or engaging them in, into 2 to 3 clear steps. Provide a demonstration. Use checklists that contain simple icons or pictures so they can visually see what you're asking them to do. You can, you can verbally tell them, but you can also offer a visual option to just reinforce that they understand what you're asking them to do or instructing them to do. Provide motion-activated nightlights, and again, this is really important, make sure that there's adequate lighting in their environment and that wherever they are walking to and from, that the pathways remain clear. In other words, there's no clutter or trip hazards. The elderly population, especially dementia, are very high risk for falls. And can set them in a downward spiral if they fall and become injured. Uh, use accessible communication devices, and you can label rooms and cabinets and things like that. And here are some caregiver self-care tips for you. Schedule respite on a routine basis if you can. Maintain routines around the care partner's energy levels. If, if a care partner is really starting to show signs of burnout and exhaustion, you need to replace that person with somebody that maybe has just started their day and has more of a positive attitude and higher energy levels. And then the other person takes a break. And then, of course, seek professional guidance if you need it. There's no shame in that. Okay, and then late-stage planner examples. So this will be now severe cognitive impairment. So the daily structure really focuses now on comfort, warmth, and minimizes necessary activities. But we want to be consistent. Always try to be consistent with people living with dementia, and that includes a consistent caregiver team or single caregiver or familiarity. This is really important, especially at this stage. Frequent short interactions rather than longer sessions because some of the things that are common triggers at this stage are the feeling of losing independence, not only losing independence, but becoming more dependent on a family member or a caregiver. That's typical at this stage. They also have a lot more difficulty expressing their discomfort, their pain, whether they're hungry, could be kind of experiencing sensory overload or overstimulation just from their surroundings. So here are some recommended caregiver responses for this stage. Have a tool for pain assessment. And you can do this via cues that they are displaying. You implement regular comfort measures. Like gentle touch. Maintain predictable and familiar routines. That really helps people with dementia feel safe and secure. Prioritize their basic needs, which comes down to feeling safe, and providing soothing interventions to help them feel safe and secure. Okay, prompts and scripts, same sample language for this stage. Comfort cue example: I'm here with you. I'm not going anywhere. Do not worry. Let's take slow breaths together. And then you can start demonstrating those. Hopefully they'll do it too. Here's another one. I'll adjust your pillow and blanket so you'll be more comfortable. Here's a pain cue acknowledgement. I know I can't ask you to tell me exactly where you're hurting, but I can clearly see that you are uncomfortable. That's acknowledgement. It's validation. Let me check with the nurse about your pain relief. I guess that's if, you know, you're in a facility. Here's a feeding cue example, but you can adjust that if they're at home. Would you like a few bites of soft yogurt now with some water nearby or some tea to follow? Care task and comfort care: regular positioning, skin checks, Mouth care, extremely important. You always need to make sure you are providing good and consistent oral hygiene. Gentle touch is very comforting for a lot of people, but not for everybody. Some people just simply don't like to be touched. So know your person. And a familiar caregiver presence is extremely helpful because familiarity is very important to people living with dementia. Otherwise, they might think that they're somewhere that they don't know, they don't recognize, and now they're not comfortable. They're scared because they don't know where they are. Provide quiet, low-stimulating environment. Soft music is a great idea for a lot of different reasons. It's relaxing and it also provides reminiscence for them and triggers memories, fond memories. And then for safety and environment, you might need to consider using padded rails if needed, implement secure fall precautions, again, remove any hazards that are obvious, And use clear signage for essential areas and keep familiar objects that you can give them or use to tell stories or start up a conversation. So keep them, you know, within reach so you can grab them at a moment's, a second's notice. And here are some caregiver self-care tips for this stage. Please don't shy away from accepting help. It takes a village, and there's no question about that when you're caring for people living with cognitive decline, especially as they're progressing through the stages. Rely on consistent routines. It's helpful to join caregiver support networks so you don't feel like you you're living alone on an island with nobody to understand what you're going through. Plan for regular medical reviews of pain control, comfort measures, and palliative considerations, comfort care. Here are some cross-cutting tools for all stages. There are trigger and response logs available. Free online that include the date and the time that a behavior was triggered, what the situation was, the response you used, and whether or not it worked or you had to try something else. Or you can make up your own, just using that as a guidance. Communication prompts include, um, and you can keep a list of these, Using short, simple sentences, one idea at a time. They're slower in processing information. And again, use validation phrases like, "I understand that you feel nervous right now," or "that you are upset right now." And then reassuring phrases, again, like, "I'm here with you and we're gonna figure this out together." Okay. Non-pharmacological strategies. Redirection, distraction with meaningful activities, music, reminiscence, light exercise, sensory, uh, stimulation that are tailored to their preferences. And then in terms of addressing medical and safety checkpoints, Conduct medical, regular medication reviews. Monitor them for side effects, especially if there are multiple physicians that are prescribing medications. A lot of people have primary care physicians and specialists that are involved in the care. Some fall prevention measures, you know, in the earlier stages, if they haven't stopped driving yet, you need to really consider safe driving skills. Safety considerations and an emergency plan when the time comes that they need to stop driving. So we're gonna wrap this up by me giving you a sample week at a glance that is stage-oriented. Okay, I mean stage-integrated is what I meant to say. So Monday morning, hydration, Light stretch, favorite breakfast. Midday, a short walk or chair-based exercise. Do simple puzzles together. In the afternoon, do a reminiscence activity with photos and then kind of taper off to quiet time. Evening, calm environment always, a familiar routine and early bedtime. Tuesday morning, medication check-in with care partner, log. Midday, social visit with a familiar family member or friend. Afternoon, a sing-along or music therapy if available. And then in the evening, gentle massage or hand-holding, some kind of comfort routine. Sunday, Mirror, making adjustments for preferences, energy, and safety. But don't forget, consistent routines are where you're really going to benefit from. So you can, you know, kind of mix and match these and mix them up based on what you feel is appropriate or what seems to be appropriate for where they're at at that day and time. So hopefully this has been really helpful and that you will implement some of these suggestions that I've offered here today. And again, as always, I will be back next week with another brand new episode of The Truth, Lies Alzheimer's Show. I really appreciate you taking the time to be here with me today and every week. If You are a regular attendee of my shows, and I'll be back next week. In the meantime, as I always say, have a great rest of your week. Stay happy, stay healthy. People need you, and I'll see you next week. Bye for now.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group, where a community of like-minded caregivers We're survivors and we're here to help.