Dementia Teams

Say you are ready to let others participate in caring for your loved one living with dementia. Maybe this is driven by concerns for your health. Maybe you’ve realized that your patience is shorter than what a day of caregiving requires. Whatever the case, now you are ready to open the door a crack and let someone in.

Where do you start?

Peer support
Dementia caregivers face unique situations every day. While each event is specific to you and your loved one, the feelings they spark are like those experienced by others walking in your shoes: frustration, anger, shortness of patience and more. When you share your feelings, in a safe setting like a support group, you feel understood, validated, and confident.

You’ll be prepared to wake up and give caregiving another try in the morning. Call 800-272-3900 to see if the Alzheimer’s Association has an online or in-person support group at a time that works for you.

“If you ever hear of someone who is completely successful, healthy, and happy as an Dementia caregiver by going it alone, let me know. That person should be written up in the medical journals and maybe even considered for sainthood.”

Online Resource Guru
During dementia you’ll need to identify many new resources and services. This is where your adult children, friends and young family members can help. They are experts at finding things on the internet. Ask if you can contact them for help finding resources online. You’ll likely be surprised at how quickly they say yes.

For them, finding a phone number, a street address, and other things is fast and easy. The bonus is that they will like you more after they help you out… and especially after you let them know they made a big difference in helping you find what you needed.

Day Brightener
It’s common for dementia caregivers to need an extra dose of smiles. Depending on the personality of your out-of-town children, friends, and family members, this may be a great way for them to contribute to your dementia team. A smile can be shared through a greeting card, or a mailed photo, a letter, a phone call or a hundred other small ways.

Local care team members can brighten a day by delivering balloons, flowers, and healthy treats like a seasonal basket of fruit. Also, it’s never been easier to have a meal delivered. Let local care team members know if you are open to them spending time with your loved one while you take a walk or run an errand. Also let them know if you and your loved one are open to a two visitors – one for your loved one and one for you.

Spiritual Advisor
Since dementia is ultimately a life-ending disease, having a spiritual caregiver on your team is a tremendous comfort. A Spiritual Caregiver can plug you in to worship services and studies that provide hope and strength.

Paid helpers for people living with dementia range from aides to LPNs to RNS. Hire someone based on the support your loved one needs. For example, during early and moderate Alzheimer’s, an aide who provides companionship and stimulation may be ideal. Another option during this stage is to enroll your loved one in a nearby adult day program. My extroverted mother who loved people and activities thrived at her adult day program for years.

During moderate to late Alzheimer’s, your loved one may need someone with additional training. Registered Nurses (RNs) are appropriate when your loved one needs medical attention during your absence, perhaps due to a secondary condition.

Agencies are available to provide home health workers. Ask if you can start with someone a few hours a week to see if they are a good fit with your loved one and their needs.

Paid companions can be essential to your goal to provide sustainable caregiving for your loved one. Your ability to care and coordinate care for your loved one five or even ten years from now is dependent on how you manage your energy and how low you keep your stress levels today.

Household Helpers
You’ve likely taken on more of your partner’s chores over time as they became less able to complete them. Without realizing it, you may now be preparing meals, doing the grocery shopping, doing the laundry, and keeping up with house cleaning in addition to the chores you’ve always done. These can be a great place to incorporate outside help.

It may be time to ask a child or friend to help you set up online grocery ordering and delivery. Perhaps it’s time to hire a housekeeper to keep up with dusting and vacuuming as well as doing the laundry. Ask your friends and neighbors for recommendations. Consider trying prepared meals from the grocery or local shops for your evening meal. This lets you focus on your loved one’s safety as they sundown this time of day.

Next Steps
“I don’t want to burden my children”. It’s a common refrain among parents. Yet, if your child or your nephew or niece is a person who likes to help, they may be waiting for you to suggest a way for them to get involved. They may be glad to be invited to do online research or shop for a greeting card for you.

Remember these four things: 1) People who like to help others believe that if you want help, you’ll ask for it.  2) You must make them believe that you actually want help. 3) You must make them believe that they personally are responsible for helping you. 4) And finally, they must be able to provide the help you need.

Helpful people can be found in your church and in your neighborhood. Remember to reach out to your local Area Agency on Aging and your local chapter of the Dementia Association for resources, many of them at no or low cost.

Bringing others into caregiving means your role transitions from team “player” to team “player/coach”. You’ll be recruiting, directing, and inspiring others to give your loved one the kind of care you want them to receive. Even when you do a little less hands-on dementia caregiving, know that you will always be your loved one’s caregiver.

What to expect when Mom has Alzheimer’s

Online class on

What you'll learn

  • How Alzheimer's will impact the person living with the disease.
  • How Alzheimer's will impact the person living in the home and caring for the person with the disease.
  • How Alzheimer's will impact the adult child(ren) of the person living with the disease.
  • How to build a family care team for a parent living with Alzheimer's.
  • How to provide the care your parent will need during Alzheimer's disease.
  • How to survive the emotional experience of Alzheimer's.
  • How to survive the changes in family dynamics that come with Alzheimer's.
  • The importance of accepting an Alzheimer's diagnosis.


This course guides adult children of people living with Alzheimer’s through the early, moderate, and late stages of the disease.

Course modules average three minutes in length. That makes them perfect for busy professionals to consume 24x7, whenever it’s most convenient.

The course is taught by Barbara Ivey, whose mother had early onset Alzheimer’s and whose father cared for her mom. Barbara helps you prepare for the impact of Alzheimer’s on the person living with the disease, the person in the home caring for them, and the adult child(ren) – especially those who live far away.

Alzheimer’s is going to change your loved one’s cognitive and physical functions, and their emotions. Rather than being caught by surprise again and again, set aside a few minutes a week to prepare now. Be calmer and healthier during your family’s journey, and better able to make sound decisions along the way.

Topics include:

  • Early-stage Alzheimer’s
  • Moderate stage Alzheimer’s
  • Late-stage Alzheimer’s
  • Mom’s changing abilities.
  • Why a safe home matters.
  • How Mom communicates through her behavior.
  • Why you still need to visit Mom throughout her Alzheimer’s.
  • Critical legal discussions: medical, financial, estate.
  • How to arrange for caregiving breaks for Dad.
  • Why and how to have family care meetings.
  • Why you want to draw Mom’s Care Map.
  • How to ask for help, and what makes people say ‘yes’.
  • Why there’s a ripple effect from lifting the caregiver’s mood.
  • Why it matters to support Mom’s creative self-expression.
  • How to be Mom’s advocate.
  • Creating care posters for Mom’s room. And more…


From your friend on the Alzheimer's journey - a daughter who's been there -

Barbara Ivey

Should Mom be living alone?

However healthy your Mom is, if she is living alone, she needs to care for herself and her well-being. When you and your Mom disagree about whether this is happening, a neutral third-party tool helps settle the question.

The Lawton Instrumental Activities of Daily Living Scale (ADL) is designed to rate Mom’s ability to:

  • Use the telephone
  • Shop
  • Prepare food
  • Do Housekeeping
  • Do Laundry
  • Obtain transportation
  • Be responsible for own medications
  • Handle finances

The Lawton Instrumental Activities of Daily Living Scale (ADL) gives you clarity around whether Mom needs additional support to get through a normal day.

If you are reading this before Mom experiences a serious health event (such as a stroke or a serious infection) commit to working through this assessment together every six months. This discipline gives you and your Mom the chance to track her changes over time. It also exercises your relationship muscles by starting regular conversations about life-changing and emotionally charged topics before an urgent decision needs to be made.

If you determine that Mom’s abilities are at the point where she needs support in order to live at home, the time has come to discuss next steps.

What considerations factor into Mom’s next living arrangement?

  • What does Mom want?

    Most older adults want to age in place by continuing to live at home. Is this what Mom wants? If so, what supports will Mom need to live a safe, healthy life? Will Mom welcome these resources into her home?

  • Care

    What level of care does Mom need now? How quickly is her condition accelerating?

  • Cost

    What financial resources are needed? Where will they come from?

  • Convenience to friends & family

    Does family intend to visit? If so, will Mom’s new living arrangement be convenient for family visits? Would being located near friends provide more emotional connection than locating near family?

Who gets a vote?

Who gets a vote on Mom’s next living arrangement? How will votes be weighed? Does Mom’s vote count? Do the votes of adult children / family members count? Does anyone else get a vote? If so, who?

Does the vote of the adult child footing the bills count the same as the vote of the adult child providing the most care? Do all adult children get a vote or only the adult children who have been involved in care?


Search engines give the impression that someone living with dementia either lives at home or in a skilled nursing home. In truth, there are a range of care alternatives that may be successful depending on the unique factors of each situation.

Contact your local Area Agency on Aging for resources near you.

When Your Parent Won’t Ask for Help

Occasionally, your dementia-caregiver Dad needs a hand.

He always resists asking for it.

Here’s a research-based approach you can use to 1) recruit support for Dad, and 2) follow up to let helpers know they made a difference.

Man driving open convertible with 2 dog
Photo by Tim Mossholder on Unsplash

Why Dad feels vulnerable asking for help

In her book Reinforcements, researcher Heidi Grant finds that we help others because we see ourselves as helpful. When we ask for help (and when we ask the right way) people say yes for their own reasons.
One thing stands in the way. Asking for help means taking a risk.

When Dad says he’s avoid asking for help because it’s easier to do things himself, he’s right.

The “I’ll do it myself” approach helps Dad avoid something called social pain. What Dad is yet to realize is that there are risks that come with a lone wolf approach to Alzheimer’s caregiving, both physical and emotional.

Imagine what a great gift you’d be giving if you stepped in and managed support for him.

How to get the help Dad needs

1. Make Explicit, direct requests for help

2. Be Reasonable

You are likely to find a helper to bring a hot meal on a specific night.

You are less likely to find a helper to bring a hot meal every Thursday night.

3. Take what you get

Maybe your potential helper is available at a different time of day, another week, or alternate month. Perhaps they are better at visiting with your loved-one than preparing meals. Listen. Consider if you can accept what helpers offer.

4. Respect your potential helpers. Know the reasons helpers help.

  • They help because it’s who they are
  • They help because they choose to help
  • They’ve been there
  • They’re there right now
  • They feel the same way

ALWAYS Let the helper know their help was effective

Helpers are most satisfied when they know their help was effective. You make this happen when you communicate with those who helped through thank you texts / emails / calls or snail-mailed notes.

  • Let the helper know the test they drove Mom to was successfully completed on time, and why that was important.
  • Let the helper know how comforting it was to Dad to have a hot meal waiting after a long day at the hospital.
  • Let the helper know that the get-well card campaign she started has lifted your parents’ spirits day after day.


To learn to effectively overcome social pain in order to ask for support, read:
Halvorson, H. G. (2018). Reinforcements: How to get people to help you. Boston, MA: Harvard Business Review Press.

Surviving Alzheimer Together – The #1 Cure for Sibling Joy & Peace


Siblings are the easiest people in the world to resent.

“You always were Mom’s favorite.”

“Dad’s never bought ME a car.”

“You’ve been living off Mom and Dad for years.”

Sadly, the older we get, the deeper resentment can grow.


A parent’s Alzheimer’s diagnosis adds strain to every sibling relationship.

“I’m helping out at Mom & Dad’s every day.”

“I’ve funded their mortgage for years.”

“I manage all their bills and checkbooks.”

My life experience has taught me the value of using Alzheimer’s as the opportunity to improve cooperation and communication among you and your siblings.  You see, Alzheimer’s is a make-or-break family experience. Get through Alzheimer’s with a ‘me vs. you guys’ mindset and the divisive wedge of sibling resentment is pounded deeper. (Think decades of likely future estrangement.) Get through Alzheimer’s by prioritizing working together and you will lighten parents’ load plus you’ll enjoy at least 7 kinds of support and peace from your siblings. Take these for example:

1. A sibling is your first responder.

Who does the care partner call when Mom refuses to dress? Or when she burns a pot on the stove or needs a ride to the doctor?  Usually a sibling or family member, often the one who lives nearest, serves as the family’s first responder.  It’s common for siblings and their partners to assume they are aware of all the times the local family member is dispatched. In truth they only hear about the five alarm fires. Like fire-fighters who hand out carbon monoxide and smoke detectors, first-responder siblings triage hundreds of safety situations that go unmentioned. They assess situations like: who is best to drive to today’s doctor appointment? Who actually ate lunch? And when were the sheets were last changed? Show appreciation and respect to your first responder. The recognition you give them will strengthen your relationship and provide the extra dose of joy they need to bear up under first-responder stress.

To understand how siblings contribute to caregiving while living at a distance, read: Are You a Caregiver? Why it matters for you to know .

2. A sibling is an eyewitness to your past.

“Memory…is the diary we all carry about with us.” Oscar Wilde

What would it be like to see someone change right before your very eyes? With Alzheimer’s, a person can look the same on the outside while inside they are transforming into a completely different person . A coffee-addicts quits cold turkey; an introvert becomes an extrovert; a minister begins to swear freely; a peaceful person becomes violent.

There will be times when you will want to remember your Mom the way she was when she raised you. Surviving Alzheimer’s together with your siblings connects you with others who are experts on your Mom. Even memories of the most imperfect mother, and the way she was, will bring you joy and peace when shared with your siblings.

3. A sibling is a comfort to you in your grief.

“… [Mom’s] personality has changed ever so much, and it is a process of change for me as a daughter. And unlike other illnesses, that change means loss - a lot of the time - and loss means grief. So, if I’m looking at it in the negative way, it’s a lot of grief over and over and over again, which is the hard part of this.” Sarah Mitchell, daughter of Wendy Mitchell, NY Times Best Selling Author of “Someone I Used to Know” on BBC Sounds podcast, April 2, 2019  

Alzheimer’s is a subtraction disease. It takes small parts of our loved-one away bit by bit. As Mom’s abilities, hobbies and preferences diminish Mom eventually gets better at accepting the change. We on the other hand seem to get worse. Maybe it’s because we are the ones who need to adapt to her losses. We long for the good old days when Mom weeded the flower garden with Old-Testament vengeance and ruled the house with a wooden spoon. We miss our Mom. We grieve the loss of the house-blend that made Mom so uniquely Mom. Because we are human, we grieve. Grief over Mom’s losses is normal. Grief will continue for as long as Mom lives with Alzheimer’s (and likely beyond). Sharing your grief with siblings can offer peace and solace for all of you.

4. A sibling can give you a firm reality check.

“Doctor, my eyes/ Tell me what you see. / I hear their cries. Just say if it’s too late for me.” – Jackson Browne

During Alzheimer’s your loved one is guaranteed to say or do things you find unbelievable. Next thing you know their care-partner will join in doing it too. What’s on earth is going on?

Changes in the Alzheimer’s brain are changing their reality. The good news is that often their ‘unusual’ behavior can be a sign that they are appropriately adapting to their new realities.

Now take a look at yourself in the mirror. How are you adapting to these changes? Somehow by standing still, you’re now the one out of step.

A great way to find peace in these moments is to talk them over with a sibling. In this case your sibling (even one on the opposite end of the political spectrum) may be the only one who can give you the reality check you really need. They can confirm that yes, in fact, this is a new behavior (rather than something you missed seeing all these years).  And reassure you that yes you can (and must) pay closer attention to your parents than you have been.

5. A sibling can help you know when to stop fixing and start accepting.

“If there's a single lesson that life teaches us, it's that wishing doesn't make it so.” ― Lev Grossman.

After your reality check, a natural response is to try to fix everything. To de-clutter the house. To organize the medications, to move Mom and Dad somewhere safer, and on, and on. These can be sound impulses, especially when put in place in concert with your siblings.

There will come a day when all the busyness and change become the problem. Your care partner is too frazzled to put your plans into action. Your loved one is less able than you realize. Alzheimer’s is at least 3 steps ahead of you.

This is when a sibling can give you the wake up call you need. A sibling can help you realize that the only positive way forward is to work on your own acceptance. To accept that your fixes are agitating and frightening for your loved one. That your fixes are exhausting for your carer. This is the time when you need to accept that entering your loved ones’ new world is the perfect gift to give them.

6. A sibling relationship creates opportunities to be merciful.

“The quality of mercy is not strain’d,
It droppeth as the gentle rain from heaven
Upon the place beneath. It is twice blest:
It blesseth him that gives and him that takes.”

The Merchant of Venice by William Shakespeare, Act 4, Scene 1 

When your sibling deserves anger, punishment, or retribution and you choose not to give them what they deserve, you are exercising mercy.  Mercy is a gift to you both. Mercy is a gift you will feel great giving, because it will free you from your resentment. And it’s a gift that feels great to receive because it is an undeserved surprise and also reminds us to return the gift of mercy.

7. A sibling is a travel companion on the long Alzheimer’s road.

“When you go out into the world, watch out for traffic, hold hands, and stick together.”
- Robert Fulghum

True, even when your sister has cooties.


Siblings can be compassionate support resources for parents  – (and for each other) during Alzheimer’s.

Sustaining each other brings you, your siblings and your care partner safely over the Alzheimer’s finish line. The healthier, stronger connections gained are a gift that helps us better appreciate the imperfect people we love.


Every effort you make to get you and your siblings on the same page during a loved one’s Alzheimer’s is valuable. Many siblings navigate the relationship and well-being changes related to Alzheimer’s on their own. Other siblings find it helpful to have a neutral third-party facilitate discussion and learning. They find a third-party gets them on the same page at a faster rate with stronger, lasting results.

The Perfect Thing now offers a solution for these siblings. Siblings Surviving Alzheimer’s brings siblings together to learn about Alzheimer’s and its impact on families. Sessions provide answers to your hows and whys, include facilitated discussions to strengthen sibling respect, collaboration and connection. This is your opportunity to work directly with Barbara Ivey, an expert who has been in your shoes.

Sessions are available on evenings and weekends. Online meetings make it possible for siblings who live in different towns or time zones to participate easily. Perfect for the closest of families or families who are physically or emotionally distant. For more details, and to book your first appointment, see Siblings Surviving Alzheimer’s.

Are you a Caregiver? Why it matters for you to know

It took me fourteen-years and nine-months to figure out that I was a caregiver. One hurdle was the terminology. To me, the word “caregiver” described my Dad. During Mom’s Alzheimer’s, Dad cared for Mom 24-hours a day, 7-days a week. Using “caregiver’ to describe what I did, well, it just felt wrong. How could the encouragement, love and resources I gave to Dad, measure up to the laundry, meals and baths Dad gave to Mom?

Fourteen-years and nine-months later, I’ve finally accepted that the same word is used to for both Dad’s role and my role. [i] I’ve also realized something more important.

Caregiving is something other than a competition.

What matters in caregiving is 1) that you care and 2) that you give care.


Alzheimer’s caregiving catches almost everyone by surprise. We quickly realize that there is a lot to learn. And that everyone involved has a different perspective about what is best for your loved one with Alzheimer’s.

One thing is for sure. Something happens when you embrace the title of Alzheimer’s caregiver. Doors begin to open. You notice things you’ve yet to notice before. Announcements for events, advertisements for support groups, and registrations for caregiver classes. They seem to almost jump out and call your name. This is because your brain now sees these as pertaining to you. You type ‘Alzheimer’s family caregiver’ or ‘family caregiver support [state]’ into BING, and your odds of finding relevant resources improve dramatically.

Even more doors open when you attend events for ‘Alzheimer’s Caregivers’ in person.  Doors to resources that help with the emotions of Alzheimer’s caregiving. Doors to services you can test out to see if they might help.  Doors to resources that provide breaks from caregiving.

Whether these sound valuable today is of little consequence. They will be valuable someday.


Of course, there are situations when only the caregiver who is the legal spouse or guardian will do. In healthcare decisions, durable power of attorney decisions, matters around guardianship of property, financial matters and others. Your attorney and advisors will alert you.


Know this: In over fifteen years of my mother’s Alzheimer’s, the occasions that required Mom’s spouse or legal guardian totaled up to a maximum of maybe 36 hours.

Every other minute of every day, if Mom could have defined what she needed in a caregiver, it would have been something like this:

Wanted: A well-rested, patient, alert, informed, cheerful person-to-treat-me-with-love.


Everything you do to be this person counts as caregiving.

Everything you do to help the primary caregiver be this person counts as caregiving.


To prove to yourself once and for all that you are a caregiver, try drawing a picture of your life right now.  This your current state. Get detailed. Get messy. Have fun.

Put your drawing aside for a day or two. The next time you pick it up, imagine someone else drew it. Try to see the drawing with fresh eyes. From what you see, would you say you are looking at the life of a caregiver?

If your answer is yes, start thinking of yourself as an Alzheimer’s Caregiver now. Someday you’ll agree it made all the difference.

Related Articles:

What your caregiver really wants from you

Phone support for an Alzheimer’s caregiver parent (Plus/Delta Review)

What 24 hours in your parents’ home can teach you

[i] Denise Brown identifies six different stages of caregiving. Learn about each in Denise’s book: The Caregiving Years, Six Stages to a Meaningful Journey. Available at:!/The-Caregiving-Years-Six-Stages-to-a-Meaningful-Journey/p/110722781/category=29969901 and on


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