Gerontologist Debby Dodds | January 20, 2019

It’s hard to comprehend the impact of caring for a loved one with dementia until you have lived it. Dementia has been called the long goodbye for a reason. Overseeing a loved one’s care requires a tremendous amount of time and planning, and there are many moments of grief along the way.  

Like millions of others, my family has been on this journey for the past 8 years. I am the primary care partner for a parent with dementia that is now under the guidance of Hospice. It’s been a constant learning experience; there have been a few very difficult decisions and some heartfelt losses.

Michael Potteiger | December 1, 2018

Our co-founder Michael Potteiger reflects on what he’s learned from caregivers over the past few years

Caregivers rarely get the appreciation and respect that they deserve. Attending to the needs of another person is a selfless task, and everyone that takes on that role deserves gratitude.  

There are millions of caregivers amongst us. In the United States, there are over 43 million caregivers - more than 34 million are providing unpaid care to a loved one over the age of 50, and more than 15 million are caring for someone who has Alzheimer’s disease or a similar dementia.  

I’ve had the privilege of working very closely with this community - specifically families and teams that are providing care for people living with dementia. It’s been a humbling (and at times heartbreaking) experience.  

No matter the circumstance, caregiving is challenging. The practical side of providing care can be overwhelming - coordinating appointments, managing medications, monitoring symptoms, and completing a wide variety of other tasks. There’s only so many hours in a day and these responsibilities can be time consuming and tedious.  

There’s also the emotional component of providing care, which can make the role significantly more demanding. It’s also where great caregivers thrive; they have an uncanny ability to make meaningful connections in the midst of challenging situations.  

The caregivers that I’ve encountered are an eclectic bunch - spanning countless different age ranges, demographics, ethnicities, and personality types. However, they all have a few similar qualities that we can all learn from.

Empathy does not always come naturally. As humans, we are hardwired to process the world through our own emotions and urges. Caregivers have the ability to perceive the world from the perspective of the recipient - recognizing, feeling, and sharing emotions.  

Practicing empathy requires self-control. When providing care, you will inevitably encounter situations that will cause you stress and frustration. Surrendering to your own emotions in those situations can prevent you from understanding the care recipient’s experience.  

Empathy also requires a person to be perceptive. One family described their in-home caregiver for their mother who was living with Alzheimer’s as “an absolute blessing”. They made special mention about her attentiveness and empathy.

A harsh reality of caregiving is understanding that not all days are good days. Sometimes, there are simply situations that are out of our control.  

Perhaps, the person receiving care is in pain, or needs to undergo a stressful procedure. In other situations, the tension is the result of the care recipient expressing anxiety, confusion, depression, or pent-up frustration.  

Either way, these moments are difficult for caregivers. Often, you feel for that person, and experience the same difficult emotions. In other circumstances, you may feel unappreciated and grow frustrated.  

Some people are defeated by these tough times - searching for ways to avoid the situation altogether. Caregivers, on the other hand, remain resolute in the face of adversity - determined to do the best that they can do. 

Michael Potteiger | December 1, 2018

As we get older, socializing often becomes increasing challenging, for a variety of reasons - family members and children relocate, work friends are lost in retirement, and loved ones pass away.  

For many older adults, mobile technologies are a welcome social and intellectual lifeline. Millions are using their smartphone or tablet to send messages, share photos, video chat, or explore topics they’re passionate about. In fact, people over the age of 65 are the fastest growing demographic when it comes to adopting technologies, such as broadband internet and smartphones.  

While millions enjoy the social and cognitive benefits of using modern technology, millions more are unable to adopt or use these technologies independently, due to significant cognitive challenges, such as Alzheimer’s disease or related dementias.  

Even though people living with Alzheimer’s may have difficulties using technology independently that does not mean they won’t benefit immensely from the experience of using technology with a caregiver.  

Using technology to personalize the care experience helps people living with Alzheimers’ and dementia stay connected to people, places, and passions that make them feel like themselves.

There is a connection in the brain between personalized music and cherished memories: long-term memories, emotions, and our favorite music are connected in an area of the brain that is one of the last to be affected by the progression of Alzheimer’s disease and related dementias. Hearing familiar music can evoke fond memories and helps people with dementia connect to their personal histories.  

Millions of people have shared inspirational stories about the power of personalized music for people living with dementia.

How to use personalized music as a caregiver:

• Input your text inListen in the home - play old records or CDs if you still have the necessary equipment.
• Take your music on the go - purchase a low cost MP3 player and transfer music from CD’s or digital purchases. MP3 are affordable (starting at $35,) portable, and can save hundreds of songs.
• Listen to any song, any time - use free music services, like Spotify or YouTube, on any smartphone or tablet to search for a specific song or artist.

For more information on using music as caregiver, check out our step-by-step guide to building personalized music paylists.

There are billions of videos on YouTube! They span endless cultures, topics, and time periods - classic TV shows, farming videos, salsa dancing, musical performances, nature clips, travel documentaries and pretty much any other obscure interest that you can imagine. Exploring personally meaningful and entertaining content on YouTube can help facilitate conversation and enjoyable reminiscing.

How to Use YouTube as a Caregiver:

When you’re ready to start, strike up a conversation about the video topic before showing a clip. Make sure to control the device and position it so that the care recipient can simply enjoy the video.  

Look for opportunities to explore new topics that can help with reminiscing, including videos about past careers, pets, theatre experiences, travel, sports, art, music, and spirituality.

People with dementia lose cognitive skills, but remain very intuitive and in touch with their emotions. They instinctively feel connected and safe around family members and friends.  

Reminiscing with pictures and videos of loved ones can also evoke these comforting emotions and feelings of connection.

How to reminisce with photos:

• Reminisce in the House - If you have access to photo albums or scrap books, pull them out and go down memory lane.
• Go digital - Use free services like email, Facebook, iCloud, Google Photos, or Dropbox to involve family members and friends.

Debby Dodds | May 1, 2018

Would you believe it if I told you that we are just a few years away from having voice-first speakers such as Amazon Echo (Alexa), Google Home (Hey Google) or Apple HomePod (Hey Siri) in the majority of American households? Well, believe it, because according to Juniper Research, 55% of households (70 million) will have these smart devices by 2022. And if you are a professional caregiver, helping an aging parent, or caring for someone that struggles with memory loss, mobility, or vision issues, this might be more exciting than you think.

At Generation Connect, we work with creative caregivers, and many of them care for people living with Alzheimer's disease and related dementias. For those living with dementia, their memory loss often results in the inability to initiate enjoyable actives, such as listening to music. For many, they have completely forgotten how to turn on their favorite songs.  

That does not mean they do not enjoy music; in fact, the opposite is typically true - familiar can be extremely comforting and enjoyable. However, it does mean that they are completely reliant on others to bring music into their lives. Most smart caregivers use music often because they know personally meaningful songs can easily lift spirits — and now it just got easier.

Voice-first speakers work with a wide variety of music services

With voice-activated speakers, caregivers can play music with their hands full, from across the room, and in one sentence. To find meaningful songs for someone, ask spouses, siblings, and children what they remember hearing in their home. You can start with just a few songs and build a playlist over time.  

When you hear or are reminded of a song you know the care recipient will love, you can add it to the playlist from the connected smartphone or tablet app. Even better, with many services, you can simply tell your assistant (Alexa/Siri/Google) to add a song to a specific playlist. 

Recently, a 97-year-old mother we know broke her hip, right arm and was moved to a rehabilitation facility. Rehab was a strange new environment, and her son noticed she was feeling isolated and getting depressed. With a cast on her arm, she could no longer hold her phone to speak with the family. The son brought her an Amazon Dot to help the communication issue. It gave her hands-free calling and a simple way to communicate with family.

The son, who had several voice-activated systems at home began to tap into many of the other fun things his mother and her care staff could try, games, jokes, and news. Here is what he told us, “I think the biggest takeaway is how much more her caregivers engage with her now. Bottom line, the speaker makes it more fun for carers too.”

Here is a creative solution from a tech-savvy caregiver:  

“Post a list of prompts on the wall behind their resident’s favorite chair. The prompts help other care staff, family and visitors enrich the resident’s day by saying one sentence to their device. It really is that simple.” 

Whether it is listening to music, communicating with family, relaxing, or playing games, when you make voice-first part of your care routine, we are pretty sure you will find that one sentence that will brighten your day.

Michael Potteiger | April 2, 2018

This summer I had the privilege of working with a Visiting Angels home care franchise to help plan, promote, and perform in a lip syncing competition to raise money for the Walk to End Alzheimer’s. Here’s why you should consider a similar event for your next fundraiser.

Lots of businesses, influencers, volunteers, and youth groups are looking for ways to get involved in the community. A lip syncing competition is exciting, and we found several local organizations that were more than happy to help us advance the cause.  

In our first year, we were able to raise over $7,000 from sponsorships, donations, and raffles. Just as important, we spread awareness for the cause to thousands of people through live performances and social media.  

We recorded the first event on an iPhone, put together a fun video, and it received ten of thousands of views on Facebook. It was a great way to raise some extra awareness for the Alzheimer's Association.

Businesses and other local organizations make significant investments in team building retreats and activities. A lip syncing competition is the ultimate team building endeavor; it requires working together, creativity, and execution. Best of all, this team building activity can help raise money for a meaningful cause.

Anyone and everyone can lip sync… We had performers across nine generations - teens, 20s, 30s, 40s, 50s, 60s, 70s, 80s and 90s! Any event that connects generations through music, dance, performance, and laughter is a winner.

Raising money can be challenging. Lots of organizations use the same event ideas to inspire donations, including bake sales, auctions, bingo nights, and golf tournaments. A lip sync competition is something different, and for that reason, it helps attract and excite a diverse group in the community.

When I was first asked to get involved, I was happy to help but did not plan on performing; singing/dancing is NOT my thing. However, a few colleagues applied an extremely effective combination of peer pressure and friendly competition, and ultimately convinced me to give it a shot.  

Even though I was prepared from choreography and rehearsals with my wife, I was seriously nervous for my performance. To my relief, the nerves disappeared as soon as I stepped out on stage and saw all the supportive faces in the crowd.  

I rocked out to a custom mix of famous bands through the decades - the Beatles, Jackson 5, Journey, and Backstreet Boys. My performance earned me a bronze medal, but more importantly, I had a blast while helping to raise money for a cause that’s important to me.  

Besides, now that I have worked up the courage to lip sync Don’t Stop Believing (dressed up as Steve Perry in a leopard print t-shirt) in front of a crowd of people, other public engagements seem much less intimidating.

Michael Potteiger | April 2, 2018

As a family, we are fully committed to living “in the moment” with our mother as she progresses through the stages of memory loss associated with Alzheimer’s disease. In fact, out-of-the-box creativity has been essential to us - like the story of the fake ID, which became the dignity hack we used to help with purse rummaging anxiety.  

We knew losing a purse might happen for Mom who was forgetting more frequently. But in her mind, leaving home without a purse, was not really an option for a ‘normal’ lady. She put her foot down; she would not relinquish her purse.  

For safety we had removed credit cards, insurance info and some personal information from her wallet. Sure enough, eventually her purse went permanently missing.

Easy enough to fix, we got a backup purse for outings and just excluded a wallet. Problem solved, right? When we headed out I simply mentioned to my mother that she, “Left her wallet at my house (a fiblet,) and we would pick it up later.”  

However, due to her short-term storage and recall issues she would repeatedly look in her purse and not find the wallet. I simply repeated that it had been left at my house. Yet after awhile, the purse rummaging behavior became more frantic. The wallet-less purse idea worked, but only briefly.  

Mom sat me down for a wallet chat: “We have to find my wallet.” Turns out, in her mind, without her wallet she could not pay her way. I was focused on the purse, yet it was the lack of a wallet and money in the purse that was also increasing her anxiety. To her, not finding a wallet meant her independence and dignity were in question, especially in a world where many things were “unexplainably, slowing, slipping away.”

Again, we thought we had the solution - put a modified wallet back in the purse. Easy to accomplish, right? We put a wallet back in her purse. In fact, I purchased two identical wallets - just in case.  

The next trip she again looked in her purse for her wallet, found it, opened it, but exclaimed, “This is not my wallet!” Okay, fair point. This new wallet was fairly empty. We had focused on having cash available in the wallet. Now, I understand that she did not see her photo ID, or any credit cards in it - just some cash.

One of her caregivers said, “make her a fake ID, and put that in her wallet.” Great idea. Being several decades over 21, a typical time folks would create fake ID, I turned a few heads at the office store when I said, “Can you help me make a fake ID?” I explained it was not for me, but for my 90-year-old mother. That drew a few understanding smiles, as we created a laminated official looking card without personal identifiers.  

To complete the wallet I used expired plastic gift cards, simulated credit cards from offers in the mail, old store receipts and, of course, cash and change.  

On our next outing, I slipped the new personalized and de-identified wallet in her purse. When she got her purse, she began rummaging, found her wallet, opened the very real looking wallet, looked to see if she had any money and that was the end of the rummaging behavior. That was a year ago. Third times a charm!

The truth is that with Alzheimer’s disease people move from rational understanding to ‘living in the moment’. In our mother’s case, she often can’t remember the topic of conversation 5 minutes ago, but she still remembers anxiety from one outing to the next about her missing wallet. This is understandable because emotional memory is stored in one of the last brain structures to be attacked by Alzheimer’s.  

Behavior is communication. My mom didn’t tell me, “It makes me anxious when I have no money or ability to pay,” she showed me through her behavior. I’m learning to speak Behavior as a second language.  

As a second language, it can sometimes take a little while for me to understand. At first, I thought she was telling me she wanted her wallet. It took me a few tries to get it right, as it may take you as you try to interpret your parent’s behavior. But keep at it. I hope you will find that the helping with your loved one’s dignity is well worth the time and effort you put into leaning to speak Behavior… We sure did.