Dementia and Alzheimer's disease can be difficult for both the person with the condition and their caregivers. As caregivers ourselves, we know how important it is for you to do everything you can to make sure your loved one is comfortable and safe. Here are some tips on how to be the best dementia or Alzheimer's caregiver you can be.
One of the most important things you can do as a dementia or Alzheimer's caregiver is to communicate clearly and effectively with your loved one. Make sure to speak slowly and clearly, using short, simple sentences. Your loved one will need time to process anything you are telling them or asking them to do.
Approach is everything! Your body language and tone may tell your loved one as much the actual words you are saying. Try to maintain eye contact and use facial expressions and gestures to help communicate your message. If your loved one is having difficulty communicating, try to find alternative ways to communicate, such as writing down your conversations, using pictures, or even sign language. Breaks are always good too. If they aren’t getting it, leave it, and come back to the conversation in a few minutes.
You cannot reason with someone living with dementia. There is no convincing them that you are right. So figure out a way to help them feel validated. Sometimes just repeating back to them what they are saying helps them feel heard, and then they may be ready to hear/process what you have to say.
Dementia and Alzheimer's can be frustrating for both caregivers and people living with the disease. It is important to be patient and understand that your loved one may not be able to do things the way they used to. Your person is changing and you are both experiencing grief and loss. Expect that things will usually not go as planned, and be prepared to go with the flow.
Try not to get angry or frustrated if things don't go according to plan. Instead, take a deep breath and try again. Sometimes less is more. Give you and your person a break. Always remember that your person isn’t giving you are hard time, they are having a hard time.
Sometimes the hardest thing is asking for help. Caring for a loved one with dementia or Alzheimer's can be overwhelming, so it is important to create a support system of family and friends who can help out when needed. Delegate tasks among family members and friends so that no one person feels overwhelmed. It is also important to take time for yourself so that you don't become burned out.
Remember, people WANT to help. When friends and family are watching you struggle, they wonder what they can do to help. Invite them to come do some activities with your person, have them take your person out to lunch or coffee. If it works better to have them stay at the house, that is a great option too.
Make sure to schedule regular breaks throughout the day so that you can take a break from caregiving duties. Needing a break doesn’t make you a bad caregiver. You can’t pour from an empty vessel, so do what you need to keep your cup at least a little full. Lastly, don't hesitate to reach out to professional organizations or respite care services if you need additional help or support. At Connectivities, we’ve created our own community of support full of people going through these exact experiences. Click here to join!
All in all, we know that caring for a loved one with dementia or Alzheimer's can be challenging, but it is also immensely rewarding. By following these tips, you can be the best caregiver you can be for your loved one.
Every year, 16 million people in the United States care for family and friends with dementia, the Centers for Disease Control and Prevention reports. Caregivers of people with dementia provide care for longer durations than those who assist individuals with other conditions. They also have comparably higher risks for anxiety, depression, and reduced quality of life. One-third of caregivers of elders with dementia are older adults themselves.
Although caring for people with dementia can be challenging, a variety of resources can help caregivers assist their loved ones. Apps, devices, activity subscription services, caregiver training, and online resources can aid caregivers with their responsibilities, providing valuable information, structure, and support.
Technology for Caregivers of People With Dementia
Research suggests that technology may benefit people caring for those with dementia, alleviating some of the stress associated with caregiving. Technology should be inexpensive, scalable, and user-friendly to be effective. Among the numerous mobile apps and wearable devices available today are the following:
Activities for Dementia Patients and Loved Ones
Whereas tools such as wearable devices may support the health and safety of individuals with dementia, enrichment activities can also be beneficial. Engaging individuals with dementia promotes higher life satisfaction and better connections with family, friends, and other caregivers.
Caregivers looking to find things to do with their loved ones may subscribe to Connectivities, a monthly subscription box with activities for adults with dementia. Each kit contains eight activities with written and digital instructions, as well as exercise and music therapy videos.
Information for Caregivers
When their loved ones receive a dementia diagnosis, families may feel overwhelmed. Many resources can help those caring for people with dementia learn about the disease and caregiving strategies.
The course covers:
A common challenge we hear from families caring for loved ones with dementia is that they can’t get them to do anything other than watch TV. In our experience, this situation really comes down to the person wanting to maintain control.
If the person says no to every suggestion, there is no risk involved, even though they might actually enjoy doing something else. It is hard to lure them away from what is safe and known, even if we know that safe and known thing isn’t good for them.
Here are some ways to help your person feel safe and in control, and move them into an alternate activity:
Every person needs to participate in a variety of activities. Things that give them a feeling of purpose, fun, relaxation and more.
As a care partner, when you are open to the unknown, and let go of expectations, you may feel less overwhelmed and even more positive about the way you are caring for your loved one.
Every human wants to feel connected to the people around them and it’s no different for someone living with dementia. Connections can become difficult to make as the person living with dementia changes and their disease progresses. Even brief moments of connection can play a significant role in how the rest of the day goes for both the person living with dementia and their care partner.
I recently delivered our August Connectivities box to a community in our area. The engagement coordinator there is great and is really enthusiastic about implementing Connectivities. She explained to me that her group activities usually last about 15-20 minutes until she loses the attention of the group and needs to shift gears to something else. This is a pretty common time span for activities to last in a group setting. It can be hard to engage all of the different levels, interests and personalities for a significant amount of time. I sat down to demonstrate a Connectivities game that is one of our welcome activities. It is a simple seasons matching game that can be done in several different ways. The group that I was working with that day had about 8 people. Guess how long we spent doing the activity? An HOUR!!! We had so much fun. The engagement coordinator couldn’t believe it! Here is how we did it……
I scattered the 4 season cards (winter, spring, summer, fall) around the table. This first step started to peak the resident’s interest, including one resident who declined to join the group. Next, I chose a picture card of a beach scene, I showed this around the table and asked what season the picture went with? The residents took their time, studied the picture and agreed that the beach scene should go under the summer category. Since I had everyone’s attention, I then asked if anyone had ever been on a beach vacation? I waited patiently and made sure to give the residents time to think about the question. There were lots of fun stories shared of time spent in California, a beach vacation in New Jersey, and trips to Mexico. At this point the resident who refused to join the group in the beginning, pulled her chair up to the table and joined in. The next card I showed the group was of pumpkins in a bed of leaves. Again, it was decided the card belonged under the Fall category. This time I asked what smells remind them
of fall? Cinnamon, nutmeg, and baking with pumpkin. I asked if there were any sounds that remind them of Fall? Leaves crunching, leaves hitting the ground and the raking of leaves. We continued through all the various picture cards sorting them by season and sharing stories, reliving memories, connecting with each other. Even some staff members had joined in and loved participating!
Many different time frames for activities can be useful! From five minutes to an hour, each type of engagement and connection can have purpose. A 5 to15 minute activity is a great way to provide a sense of security, calm anxieties, and to help with challenging or aggressive behaviors. We often find that engagement interventions are all that’s needed to re-set someone’s mood and get them back into their normal routine. Larger groups offer a chance to get everyone involved in a longer engagement activity, including residents who wouldn’t normally join in. Group activities provide a sense of community and connection and can be great fun! A simple activity can be extended by playing in teams, having partners, getting staff and the care team involved, asking additional questions, sharing your thoughts with the group, and learning new things about the individuals participating. Larger and longer lasting activities offer the opportunity to create new connections, to develop new interests, and provide an increase in self-esteem and sense of accomplishment.
Connectivities is great because the actual activities are all right there for you. Everything you need and proven to work with people living with all stages of dementia. You are also provided with the tools to make it a 15 minute or 60 minute activity, based on your needs and your participant’s needs that day. Creating authentic connections delivered right to your door could not be easier with Connectivities.
Connectivities was recently featured by Teepa Snow's Positive Approach to Care as an option for care partners to create opportunities for people living with dementia to maintain essential skills in language, fine and gross motor movement, problem-solving, and more.
By keeping a routine that includes purposeful and leisure activities, care partners can create opportunities for people living with dementia to maintain essential skills in language, fine and gross motor movement, problem solving, and more.
As Teepa tells us, there are four types of activities each of us participates in as we go about our lives. They are purposeful, leisure, self-care, and restorative/rest activities. For people living with dementia, it becomes more and more difficult to initiate and participate in many of the activities they once enjoyed. Leaving them and their care partners feeling a growing sense of loss and frustration. By shifting our focus on the types of activities people living with dementia continue to engage in, we can help both parties lead more fulfilling lives.
As care partners in both home and community settings, we tend to focus on self-care and restorative activities such as grooming and rest/sleep. With such an intense focus on these activities we often become frustrated with each other and lose the connection we once had and continue to crave. Consistently being met with frustration and resistance leads to a cycle of exhaustion that we often see with family care partners.
At Connectivities, we believe that if we continue to include activities for purpose and leisure in our daily routine, we can maintain stronger connections and better quality of life. As a person living with dementia progresses, we have to be open about the activities they might try. We often hear, My dad would never do that or My mom loved to sew but I can’t get her to do anything now.
Sometimes whether or not the person living with dementia will participate in an activity has more to do with the care partner’s attitude about it or approach than the person’s willingness or ability. In order to engage someone, we have to set them up for success. They may not have enjoyed making or building things, but they love to help! So, we set up an activity and then we ask for their help. At this point the participation is less about what the activity is, and more about the feeling of purpose or accomplishment that happens during the interaction.
For example, in our July Connectivities box, one of the activities was to put together a patriotic baton. It involved putting stoppers on a clear plastic tube and filling the tube with pony beads and patriotic confetti. During our trial of this activity some people were happy to follow the instructions and tickled with the end product. Our more reluctant participants responded well to being asked to help and then solving the problem of getting the pony beads into the tube. Being asked to solve a problem or help with something can be very compelling.
Leisure activities such as games or sensory based projects can calm and engage both the care partner and the person living with dementia. In our Connectivities vacations themed August box, participants make a version of an I Spy tube. Participants are delighted by the tiny vacation themed objects that go into the tube and then can spend their time looking for them among the rice filler and other objects. Finding the objects and talking about memories involving each one extends the activity even further.
Creating these opportunities for purpose and leisure can take some time and effort to plan and prepare, so it is understandable that a care partner in the cycle of exhaustion may find it difficult. There are multiple resources available for care partners or other family members to find and prepare for these types of activities. In fact, just looking on Pinterest will generate an endless number of ideas.
Connectivities is a brand-new resource that wholly addresses the need for both purposeful and leisure activities. Connectivities offers activities proven to engage people living with dementia. A monthly subscription is available as well as single boxes, mini boxes, and sensory kits. Each activity comes with the materials needed to complete the activity, detailed printed instructions, video instructional supports, and therapy goals.
By keeping a routine that includes purposeful and leisure activities both at home and in group care settings, care partners can reduce boredom as well as create opportunities for people living with dementia to maintain essential skills in language, fine and gross motor movement, problem solving, and more. Connectivities was designed to make this important work as easy as possible for people in any setting. As we consider what constitutes a life worth living for people living with dementia, we have to remain open-minded and flexible in order to foster opportunities for connection with purpose and leisure activities.
A common challenge we hear from families caring for loved ones with dementia is that they can’t get them to do anything other than watch TV. In our experience, this situation really comes down to the person wanting to maintain control.
If the person says no to every suggestion, there is no risk involved, even though they might actually enjoy doing something else. It is hard to lure them away from what is safe and known, even if we know that safe and known thing isn’t good for them.
Here are some ways to help your person feel safe and in control, and move them into an alternate activity:
Every person needs to participate in a variety of activities. Things that give them a feeling of purpose, fun, relaxation and more.
As a care partner, when you are open to the unknown, and let go of expectations, you may feel less overwhelmed and even more positive about the way you are caring for your loved one.
Here are ten different tips to utilize when visiting your loved one living with dementia.
One of the most difficult things to handle when caring for a loved one living with dementia is agitation. It is pretty common for someone living with dementia to escalate in their feelings of frustration and become agitated. A proactive approach is the best way to start, but sometimes this doesn’t work and the caregiver needs to redirect or intervene during a period of agitation.
Proactive Approach
We have found that giving someone a feeling of control is the first step to avoiding frustration. Control for them may be different than it is for you or me. Feeling out of control often comes from having an unmet need, or not understanding the situation. Below are some tips for giving someone that feeling of control:
Calming During an Episode of Agitation
For more information access our book, “Now is Found” or visit the Connectivities website at https://connectivities.us/
Being a caregiver is one of the hardest jobs out there. It's a full-time job that often doesn't leave room for much else. If you're feeling stressed, burned out, or like you're just not sure where to turn, never fear! There are plenty of resources out there to help you in your journey.
Here are eight of the best:
1. Books
There are some great books out there specifically for caregivers. We recommend "The Caregiver's Survival Guide" by Elizabeth Lombardo and "The Caregiver's Path to Compassionate Caregiving" by Erika Funke. These books offer practical advice and tips for caregivers, as well as emotional support. As a caregiver, it is also critical to take care of yourself. Check out “Just for You: A Daily Self Care Journal” by Elizabeth Miller.
2. Articles
If you're looking for more specific advice or information on a certain topic, there are loads of great articles online. Try searching for articles on "dementia caregiving tips" or "how to deal with caregiver stress." Two of our favorite places to find information is Teepa Snow’s Positive Approach to Care, and Happy Healthy Caregiver. You can also find helpful articles on the National Institute on Aging website or the Alzheimer's Association website.
3. Podcasts/TV/Radio Shows
Podcasts are a great way to get information and support while you're on the go. We recommend "The DementiaSherpa Show" and "Caregivers Circle." Both of these podcasts offer practical advice and emotional support for caregivers of loved ones with dementia. “Alzheimer’s Speaks Radio” is another great resource. Long time dementia care advocate Lori Le Bay talks to caregivers, people living with dementia and other advocates. A brand new TV show, called Dementia Diva’s will be airing soon on the free streaming service Saltbox TV.
4. Poems
Poetry can be a great source of comfort when you're feeling overwhelmed or stressed. Check out poems by Tish Davidson, Naomi Shihab Nye, and Billy Collins. Or search for poems on specific topics like "caregiving," "dementia," or "aging." Writing poetry with your loved one can be healing for both of you. Visit The Alzheimer’s Poetry Project online for books and information on how to create poetry together.
5. YouTube Accounts
There are some great YouTube channels out there specifically for caregivers. We recommend Dementia Careblazers, Dementia Success Path and Caregiver Stress. These channels offer practical advice, emotional support, and information on dealing with dementia specifically.
6. Social Accounts
Following certain social media accounts can also be a great way to get support as a caregiver. We recommend following @yourdementiatherapist on Instagram @dementiacaregiverssupportgroup on Facebook. These accounts offer practical tips, emotional support, community and information specifically for caregivers of loved ones with dementia.
7. Apps
Apps can also be a helpful resource for caregivers. There are apps that can help with things like managing medications, tracking doctor's appointments, and communicating with other members of the care team. We recommend the apps Medisafe, CareZone, and Life360 . These apps offer helpful features like medication reminders, appointment tracking, and care team communication.
8. Websites
In addition to all the great resources already mentioned, there are also some great websites specifically for caregivers. We recommend Dementia Map, The Caregiver Space, AgingCare, and Eldercare Locator. These websites offer practical tips, information on local resources, and forums where caregivers can connect with one another.
Being a caregiver is hard work. But it doesn't have to be done alone. There are tons of great resources out there to help you in your journey. So, if you're feeling overwhelmed, take a deep breath and know that help is available. Whether you need practical tips, emotional support, or just someone to talk to, there are people and resources out there who can help.
Since the COVID pandemic began, lockdowns, social distancing and intermittent quarantining has made it hard for families and communities to connect. And those isolating issues are compounded for people with dementia and their caregivers.
Due to heightened medical concerns, social interactions and outings may be curtailed or canceled, leaving the caregiver and cognitively impaired individual more time “alone” together.
Filling the endless hours with meaningful, enriching activities can be a challenge both for family and professional caregivers. That’s why it’s not surprising one of the frequent questions caregivers ask geriatric specialists and neurologists is: What can we do all day?
Now, one organization hopes to provide an answer—one that arrives at your door in a brightly colored box.
In July 2022, Prairie Elder Care, a Kansas-based assisted living and dementia-care organization, launched Connectivities, a monthly subscription service for caregivers of people with dementia.
“Many times, for caretakers, the burden of planning overshadows their ability to truly engage,” said Connectivities co-founder Michala Gibson, RN. “Connectivities delivers a solution that’s simple, purposeful and personal right to caretakers’ front doorsteps.”
Each box includes eight or more seasonal activities, puzzles, games, etc., that have been tested by individuals with dementia in assisted living. While they may look simple, the materials in the box are finely curated to engage individuals with differing cognitive and physical abilities.
"While they may look simple, the materials in the box are finely curated to engage individuals with differing cognitive and physical abilities."
“We spend a lot of time testing different shapes and sizes of the same product to figure out what’s actually going to work best for that particular activity,” said Mandy Shoemaker, a former elementary school principal and the other Connectivities co-founder.
To encourage multi-generational participation, Connectivities include a step-by-step written guide with photo illustrations, so many activities can be led or completed with the assistance of elementary-aged children and teenagers.
In addition, the instructions include therapy goals and modifications to adapt the activity to the appropriate level of difficulty.
“In dementia care,” Shoemaker said, “we talk a lot about how the memory of an activity or interaction may quickly fade, but the feelings they create last.”
Each box also comes with a link to a website that features instructional videos as well as additional music therapy and exercise activities and support links to a caregiver community.
As the owners of the Prairie Elder Care and Prairie Farmstead group homes in Kansas, Gibson and Shoemaker’s experiences led them to develop a philosophy of care that permeates the contents of every box.
“Connectivities really came from our engagement model, which is based on community, connection and control,” Gibson said. “People who are living with dementia need to have a feeling of control to be able to connect with people and form a community. “
During her 20 years in dementia care, Gibson has found maintaining that sense of control depends on caregivers being able to understand, anticipate and satisfy needs before the onset of frustration, confusion and anger.
“When you have a group of people who all feel in control, they can connect with the people around them and the environment, like animals and gardens,” Gibson explains. “And the more connections we have, the more a sense of community that we have or sense of belonging.”
More than just an arts-and-crafts kit or busy work, Connectivities boxes seek to strengthen the bonds between the caregivers, family members, friends and the person with dementia.
"More than just an arts-and-crafts kit or busy work, Connectivities boxes seek to strengthen the bonds between the caregivers, family members, friends and the person with dementia."
The 30-minute activities are designed to prompt a sharing of memories and experiences as well as foster connections to family, nature, senses, history, our past, science, music, our bodies, food, creativity, etc.
The activities also help retain important life skills and intellectual abilities. For example, pouring beads and confetti into a tube to make Independence Day baton demands concentration and problem-solving skills. During testing, Gibson noticed one couple in particular, who became very focused and worked together to complete the tasks.
“The activities give them that sense of purpose and utilizes the skills that they have—rather than highlight or test the things that they no longer have,” she said.
"The activities give them that sense of purpose and utilizes the skills that they have—rather than highlight or test the things that they no longer have."
One subscriber recently described how the activities enhanced the family’s visit with her 99-year-old great grandmother.
“Nothing seemed to motivate or ground her to the present moment,” the subscriber wrote. “We showed her the Connectivities box and started the beach activity with sand and seashells. It all changed as we visited [through the sharing of memories] the beaches of California (her home for 67 years before moving to Kansas) together.”
The activities can also help some family members make a meaningful transition.
“Before dementia, maybe the person wouldn’t have enjoyed these activities,” Shoemaker said. “But things are a little different now, and sometimes family members have to let go of who and what used to be and accept the individuals for who they are now.”
Although they own and are expanding their group homes, the two women see a lot of potential for the program.
“Our hope for Connectivities,” Gibson explained, “is it helps people stay at home longer, have better quality of life and answers that question: What do I do to engage people with dementia?”
A single Connectivities box including shipping costs $69. The subscription price is $62.99 including shipping, and group boxes are available from $199.99 for six people to $499.99 for 24 people.
We all need a break from our daily routines every now and then, and that’s especially true for people living with dementia. If you’re caring for a loved one living with dementia, it’s also important to take some time for yourself on a regular basis. Research shows that just thirty minutes outside in nature can be a game changer for any of us. But finding activities that are both enjoyable and safe for both of you can be a challenge. That’s why we’ve put together a list of the best dementia-friendly outings to help you and your loved one get out of the house. Some of these outings are best suited for people living with beginning stages or milder Alzheimer’s and dementia.
Whether you’re looking for a way to spend some quality time together or you simply need a break from the regular routine, these outings are sure to please. And because they’re designed with safety in mind, you can relax and enjoy your time together without worry. So go ahead and explore our list of the best dementia-friendly outings.
Caring for someone living with dementia can be both challenging and rewarding. It’s important to find ways relieve stress and stay positive — you and your loved one will benefit from it. We hope our list of the best dementia-friendly outings has given some ideas help you get started! Remember, it‘s important take breaks and focus on self-care —you deserve it!