Displaying items by tag: caregiving

I recently gave a presentation to professional caregivers with my CaringKind colleagues Stephani Shivers and Olivia Cohen. Stephani shared a study about the lasting power of emotions, specifically laughter/happiness and sadness. After watching the “fake pleasure” scene from When Harry Met Sally, some people in the study had sustained happiness for 2, 4 or 8 hours or longer. After watching the sad part of Forest Gump, the sadness was sustained similarly. Olivia then described vicarious trauma (something caregivers are always at risk for) and that we can also get vicarious joy.

So, here’s the lesson I wanted to share with you. Plan and administer doses of joy just like medications. Know your loved one’s or client’s prescriptions.

The Joylenol. What is your loved one’s source of joy? Maybe it is watching a favorite TV show, or talking about their grandchildren, dancing, petting a cat or enjoying a hearty bowl of soup. Knowing what brings them true and reliable joy is essential to this prescription. 

The Dosage. How much joy do they need to have sustained positive emotions? Maybe it’s 10 minutes or maybe it’s longer. Having the right dose of Joylenol is just as important as the right dosage of any prescription.

The Timing. When to give a prescription is a key part of proper treatment. For example, if I were to take a pain reliever for my knee pain, I wouldn’t want to wait until I can’t walk on my knees. Then it’s going to take more pain reliever, or the milder prescription may not even work. Same thing for Joylenol. If a person loves music, enjoy some BEFORE a shower so that the positive emotions remain through the otherwise unpleasant activity. If you want someone to sleep well, avoid the news before bed and instead watch a favorite sitcom on demand.

The Frequency. Some need joy on occasion. When living with dementia, people may need their Joylenol on a more regular or routine basis. I recommend at least once a day. But if your person has a lot of negative reactions or frustrations or complex medical needs, they may need their Joylenol more frequently. Know what works for them and then try to increase the frequency through the day to get the desired effect. And feel free to use as needed. 

Take Two. Customizing this intervention is the cornerstone of person-centered care. My Joylenol would include music/singing, funny animal videos, sweet sounds of babies laughing, doing something creative like crochet or Zentangles® and buttered popcorn or some yummy take-out. I am not going to enjoy popcorn before my morning shower, but the animal or baby videos might just put me in a positive mood, then add music/singing to my shower time and I’m set up for a great day.

Vicarious Joy. As Olivia pointed out, caregivers can feel joy just by knowing they made the person living with dementia happy. I’ll add to this prescription that Joylenol is most effective when shared. And if you as a caregiver are feeling stressed, I am hereby writing a prescription of Joylenol for you!

If you are struggling to find Joylenol in your life, please reach out to Atwood Dementia Group at 860.798.0369 or This email address is being protected from spambots. You need JavaScript enabled to view it.. Our coaches can walk you through strategies to improve your caregiving experiences.

Dementia can make it hard for people to communicate, and this can be upsetting and frustrating for them and those around them. However, there are many ways to help you support and communicate with each other. In the field of dementia care, we train staff members essential communication strategies for working with clients/residents. Family care partners can reduce negative reactions and improve quality of life by avoiding these 7 common communication gaffs.

1. "Remember when...?" 

While it can be tempting to try and jog the memory of somebody living with dementia, this kind of question is often a reminder of memories lost. This can be a frustrating or painful experience, and there’s also no evidence that training the brain in this way will help somebody hold on to memories. That’s not to say you should avoid talking about the past, but it’s better to lead the conversation and allow the person to join in. 

Try this instead: 

Instead of posing a question, try leading with ‘I remember when…’ instead. That way the person can search their memory calmly without feeling embarrassed, then join in if they like. 

2. "I've just told you that" 

Having to answer the same question several times can be frustrating, but repetition happens because the individual with dementia struggles to register new information and recall short term memories. There is little benefit to passing on your frustration to somebody with dementia, and saying ‘I’ve just told you that’ only reminds the person of their condition. 

Try this instead: 

Try to be polite and as patient as possible. It's important for somebody with dementia to feel they're being listened to and understood. Once asked (again) distract and redirect them to something they can focus on other than their question.

3. "Your brother died 10 years ago" 

It’s very common for a person living with dementia to forget about a past bereavement or ask for somebody who has passed away. Reminding them of a loved one's death can be painful, even causing them to re-live the grief they've already experienced. Care partners’ responses may vary for different circumstances, but it's always good to show sensitivity and to address the underlying emotion. A person asking for a parent (for example) may feel unsure or unsafe.

Try this instead: 

It may be better to come up with another reason for somebody's absence, while at other times a gentle reminder is appropriate. In the later stages of dementia, trying to remind them that the  person has died is unlikely to work and is best avoided. I usually turn the question around to the person asking; “I’m not sure exactly, where do you think they may be?” and then ask them for help to engage in something you’re doing to help them feel safe and needed; “Well, until they get here, why don’t we polish some silverware.”

4. "What did you do this morning?" 

Avoid asking too many open-ended questions as it could be stressful for a person with dementia and risk making them feel “crazy” or “stupid” if they can’t remember the answer. It’s better to focus on what’s happening in the present. Many of my clients say they are assessing if it’s a good day or bad day, which is fine. For general communication though, avoid these questions and give options based on their preferences.

Try this instead: 

Identify what they did and ask their opinion, such as, “I saw you reading the newspaper. I think the forecast is for rain tonight. Do you think they’re right?” You can also skip “what did you do,” and just tap into their “chit chat” skill, which remains intact until late stage. Rather than ‘what would you like to drink?’ you could ask ‘do you want tea or coffee?’ or more simply, ‘do you want a cup of tea?’

5. "Do you recognize me?" 

It can be distressing when somebody with dementia doesn’t recognize you, but remember that the feeling is mutual. Asking the person if they know who you are can make them feel guilty if they don't remember, or offended if they do. 

Try this instead: 

The way you greet somebody with dementia might change depending on the stage of their condition – judge for yourself and keep it friendly. A warm hello would suffice, or it may help to say your name and relationship, keeping it light. “Hi grandma, it’s your favorite granddaughter, Pam.”

6. "Let’s have a cup of tea now, then after that we can go for a nice walk and get lunch in that café you like in town."

Long, complex sentences can be difficult to grasp for somebody with dementia. It's difficult to process several ideas at once as cognitive abilities slow down, so it's better to give directions or instructions one step at a time. 

Try this instead: 

Use short, simple sentences as much as possible. Avoid speaking in loud environments and wait until you have the person’s full attention before you start a conversation. 

7. "Do you need some help with that, sweetie/honey/dear?" 

Words like ‘sweetie’, ‘honey’ and ‘dear’ can be patronizing for people living with dementia. This is sometimes referred to as ‘elderspeak’ and can cause older people to feel infantilized. Also, research shows that elderspeak hastens the course of dementia – it makes them worse faster.

Try this instead: 

Always remember the person behind dementia. Using their preferred name is best. This helps focus and aids concentration too.

For individualized coaching on communication techniques and avoiding behavioral triggers, please contact Atwood Dementia Group at 860.798.0369.

Often, I hear from clients that they wish they knew me sooner in their journey with dementia. My answer is that they found me exactly when they were ready for me. The truth is that coaching is not the “end all, be all” and I want to share with you how I see the continuum of resources for individuals and families.

Informational helplines, websites and referral services are the first stop for many families. Most national organizations like the Alzheimer’s Association and the American Parkinson’s Disease Association have helplines that are staffed by trained volunteers and/or professionals. They provide good basic information to help give you solid information and referrals to local supports. Some information is also available through web-based resources, such as blogs, medical websites and companies that try to capture your web-info for future referrals like “A Place for Mom,” SeniorAdvisor.com and Caring.com. They offer you “free” information and referrals and make their money from the community when you move into a community/facility. They are very aggressive but do provide some good resources (warning: if you put your info into their website, you cannot access websites of service providers without going through their site again – tricky way they ensure they don’t lose you as a lead). Good local supports are also available through the United Way’s InfoLine at 211, Area Agencies on Aging programs, and Hartford Health Care’s Center for Healthy Aging. The latter can also provide a free in-home evaluation to make recommendations for services your family member may need.

Coaching is a different level of support. Some specific times you may benefit from coaching and consultation includes major transitions, when you’re trying to coordinate multiple family members or have complex family dynamics, when you have differences of opinion on the best decision for your loved one(s) goals, and when you have barriers that can be overcome with case-specific information needs. For instance, a husband who keeps trying to get his wife to take a shower may benefit from a brochure on communication (Helpline), or an assessment of the bathroom for safety or referral to a home care agency (local supports), and he may really benefit from specific examples of how to tailor his approach by using a coach. A coach works with families to identify where the person with dementia is functioning by “staging” their disease, and then offers stage-specific interventions and support to help the family meet their goals.

Coaching is different from counseling. Coaches have the answers you need and know where your knowledge deficits may result in problems. Counselors are helpful if you are having emotional barriers and need treatment for common challenges which result from the stresses of caregiving and family/life changes. I think of it like this: a counselor asks, “And how does that make you feel?” If that makes you feel like throttling the counselor, you may need a coach instead. If a coach suggests a change and it makes you have an anxiety attack, your needs may best be met by a counselor. Obviously the two work well together for caregivers too.

Care management is the next level of support. People sometimes think of care managers as expert referral sources in a “rent a daughter” model of care. A care manager helps families coordinate all aspects of support, coordinating the appointments, sometimes responding to meet the person in the emergency room, and corralling family members to help meet their clients’ goals. Case managers are angels on earth. It’s a hard and taxing job, and well used by families with complex care needs or for long-distance caregiving. Sometimes using a coach is a good transition until families are open to the thought of a care manager. Stressed caregivers often feel like they NEED to do it on their own, or should be able to, but the disease often takes two victims - caregiver and person diagnosed with dementia - and care managers can substantially reduce that risk.

I know this is long, and my goal is to help you make informed decisions, always. If you have any questions or want to refer a friend but aren’t sure which level they should be using, you can email or call This email address is being protected from spambots. You need JavaScript enabled to view it..