Laura Herman is a writer and consultant offering caregivers of people with dementia professional support. She's been working in this field for 25 years and has seen first-hand the impact of dementia on families, caregivers, and beyond. She also has amassed numerous best practices along the way.
As a professional negotiator, I see people when they prepare for big negotiations and sometimes during them. Often, when it comes to medical care or caregiving for elderly family members, they employ similar tactics and strategies. If they've come through one of our workshops, that could be good news. If they haven't, it can mean all kinds of complications.
I'm not suggesting your negotiation counterparties have dementia!
However, what I learned in my conversation with Laura amounted to some great tips when negotiating with your family member with dementia. It struck me that these truths transcend this single iteration. But, at a certain age, there is a strong chance someone in your life might have dementia. Laura's insights in negotiating dementia are invaluable.
Sib: Let me ask a basic question. What exactly is dementia?
Laura: It's a generic term for "impairment of cognition that's severe enough to interfere with daily life." A lot of people associate it with memory issues, but it can also impact other areas, like personality or judgment. In some cases, there isn't even much effect on memory. There are over 100 different types of dementia, and the causes vary. Sometimes it's due to diseases like Alzheimer's or Parkinson's. Other times it's due to strokes or blood loss to the brain. The result is that it manifests uniquely for each person.
Sib: If we are new to dementia care what do we need to be aware of?
Laura: One of the biggest issues is navigating how what they say aligns with their behavior. It's too easy to write off all their behavior as "well, they have dementia." Even though they have dementia, they do have human needs. Are they uncomfortable, are they hungry, are they depressed?
The thing to think about is that behavior communicates unmet needs. If I blame the dementia, I may not think any further, to see if the person is hungry, frightened, or bored. Medical conditions, like depression, constipation, infections, or blood sugar issues can really affect behavior. And pain is a huge problem... it's grossly underrecognized and under-treated in people with dementia.
For example, Mary was a resident in my memory care community who would routinely yell at the staff. She'd call us idiots and curse us out up and down and back again! We really didn't know why for a long time. She had a history of back pain - her back had hurt most of her adult life - but whenever we asked her if she was hurting she'd yell at us that she wasn't. At one point, she ended up falling and badly twisting her knee. It was swollen, and black and blue. There was just no way it wouldn't be hurting. But Mary just yelled at us that she was fine. Thankfully, the doctor prescribed some pain medication anyway. It made a huge difference! She became happy, loving... complimentary towards us. And it wasn't like she was high. She was more alert and functional than she'd been in a long time. And it lasted! We were able to support her at this new level for the rest of her life because we learned to recognize how she communicated pain.
I learned a lot from Mary. People with dementia can't always recognize or communicate what's bothering them. But they're still affected by it, and treating it helps. But we need to learn to listen to the message in their behavior in order to support them.
Sib: You mentioned depression. How does that come into play?
Laura: Depression is very common in dementia patients but it be hard to recognize. Often it looks like irritability and anger more than sadness. Depression can also worsen the symptoms of dementia. It can affect people's thinking, making us slow, confused, apathetic... It's also important to remember that people with dementia need emotional support. They still need to process their emotions and grieve their losses - the loss of their independence and hopes for the future is huge! One of the stages of grief is depression. Dementia complicates the grieving process, but it doesn't negate the need for it. Imagine if the doctor told you today that you have dementia. What emotions would you go through? It's the same for them. But they may need more support to process through them than they did in the past.
Sib: What are the most common negotiations you see when it comes to dementia care?
Laura: Two kinds of negotiations come to mind. First, is with the person with dementia themself. The second kind of negotiations I see are with other family members.
In the early stages of dementia, it's common for the family to decide that person is not fit to drive and the person does not agree. Some families just cut the person off from driving. Imagine how it would feel if a family member did that to you. It may be useful to assess how often the person is actually driving. Perhaps find some solutions that don't involve removing the freedom. I know one family, where the older couple started taking all outings together. After a year of not driving, the person with dementia asked why they were paying for insurance for her to drive and offered to give up driving!
Sib: You've heard it said that negotiation is the art of letting them have your way!
Laura: Sometimes that can be effective with people with dementia. The other big negotiation can be with other family members. Usually, this takes the form of a negotiation between family members who live with or nearby the person with dementia and ones who live further away. The far-away family members may feel like the local ones are overreacting. In some practical ways, it may leave the local family members feeling less supported. For instance, "Mom needs help around the house" might be met with the response, "You are only 3 miles away."
My strongest recommendation is to educate yourself and plan ahead. You can prevent many problems by getting resources in place in time - and to do that, you need to know about them before they are needed. There's a lot of resistance to having hard conversations. There's a lot of fear involved. But facing it head-on will put you in a better position than trying to pretend it doesn't exist. Get the diagnosis, so you know what you're dealing with. Then you can learn what you need to know, and be in a better place to avoid complications like adverse reactions from medications, falls, hospitalizations, or behavioral challenges. And by learning what you're dealing with, you can adapt how you communicate, and learn how to support the person with dementia to make their own decisions about their own lives to a greater extent than most people imagine possible.
It's not easy to do on your own, though, especially if you haven't had experience with dementia before. It's essential to create a system of people who can support you or guide you when you need it. That's what I love doing for family caregivers. Helping them understand how to communicate with their loved one, and helping them find the answers to the questions they'd be asking if only they knew to.
It is not an easy road. And as with everything, there are easier ways and harder ways.
Laura Herman is a dementia support professional and consultant who believes strongly that all people can feel and function at their best when their needs are met. She loves helping family caregivers learn to better understand their loved ones' needs through the messages in their behavior.
Learn more about the ABC Dementia Course & Community and how to Appreciate Behavioral Communication at ABCDementia.org.
Sib Law is Founder and Chief Consultant with DealCraftTM Advisors. He has worked with two-thirds of Fortune 100 companies, helping negotiators craft better, more profitable deals. DealCraft Advisors offers consulting, pro-sessions, and workshops helping teams of negotiators recapture value they tend to leave on the table. DealCraftAdvisors.com