Christmas with dementia: Families of Alzheimer's patients reveal how the cruel illness makes festive season 'heart-wrenching' and 'anxiety-driven' – as data shows 16m Americans will be caregivers this year

Millions of Americans dread the chaos of spending the Christmas holiday with relatives and in-laws.

But Esther Blair Schiffman, whose mother was diagnosed with Alzheimer’s at 50, and Amy Hatkoff, whose sister passed away after a 12-year battle with the memory-robbing disease, would do anything to have those moments – both good and bad – back again.

Ms Schiffman and her mother usually spend the holidays at her grandmother’s home in Florida, where the whole family gathers together – but recent years have looked different. 

The 27-year-old told DailyMail.com her mother has not been able to travel for five years because of her advanced Alzheimer’s disease. Abbe, now 65 years old, is in hospice care in New York. 

Esther said this will be the fifth Christmas that her mother cannot celebrate with her family. 

Meanwhile, Ms Hatkoff, will spend her third Christmas without her big sister Susan, who was diagnosed with Alzheimer’s at 65 and died in 2021 at age 77. She told DailyMail.com holidays without her sister, who Amy said was like a second mother to her, haven’t been easy. 

Ms Schiffman and Ms Hatkoff are just two of the 16 million Americans who have cared for a loved one with dementia. 

Esther Blair Schiffman [pictured left], whose mom was diagnosed with Alzheimer’s at 50, is spending her first Christmas without her mother who is currently in hospice care

Amy Hatkoff, whose sister Susan [pictured sitting] passed away after a 12-year battle with the disease, is spending her third Christmas without her big sister

There are 6.7 million Americans diagnosed with Alzheimer’s disease, a form of dementia, and because of the growing aging population in the US, that number is expected to surge to 13 million by 2050.

Susan and Abbe fall within the five to six percent of sufferers who develop symptoms before age 65 and are diagnosed with early-onset Alzheimer’s.

And early-onset of the condition can take years to diagnose as symptoms often look like those of other neurological conditions such as aphasia, which affects language, and multiple sclerosis, which affects the nervous system.

Because of the delay, early-onset patients can miss out on treatments, losing precious time of lucidness.  

Esther said her mother had tried a medication to slow down her cognitive decline at one point, ‘but she was a little bit far along for it to even work.’ 

Ms Schiffman, now 27, had just entered her teenage years when her mother received a diagnosis 14 years ago.

The Schiffman family, including Abbe, typically travel from New York City to Esther’s grandmother’s home in Florida for the holidays where the entire family takes a vacation. 

But traveling with a person living with dementia is risky. Changes in a patient’s routine can cause them to become disoriented, agitated, anxious, and even violent.

Because of Abbe’s condition, Esther decided it would be too much stress for her ailing mother.

She told DailyMail.com: ‘The biggest struggle with having a family member during the holidays that is struggling with Alzheimer’s or dementia is you feel like it’s an unhappy situation in such a happy time.

‘You don’t want to be a burden on other people who are trying to celebrate this in the hall during the holidays.’

Abbe Schiffman [topmost person pictured] was diagnosed with Alzheimer’s disease when her daughter Esther was just 13 years old 

Amy Hatkoff [pictured left] said for years she was able to sense how Susan was feeling in difficult situations, offering a comforting embrace and a calming presence

This year, Abbe will be looked after by her team of health aides, who help to stimulate her brain and care for her more basic needs like feeding and bathing.  

Ms Schiffman said: ‘We had to make a decision at a certain point where she couldn’t travel anymore. Obviously, this was a really difficult decision because we did bring her for many years even with having this disease, but it got very difficult over time.

‘It’s anxiety-driven and you have to pick and choose if it’s the right time to make those changes. Even though it’s a tradition and it’s what you love to do, there are priorities, and when you are struggling with someone who is not able to do those traditions anymore, you have to make tough choices.’

Ms Hatkoff, 72, meanwhile, is preparing for her third Christmas without her sister Susan, who was diagnosed with Alzheimer’s in 2009 at 65 years old. She lived with the disease for 12 years before passing away in January 2021. 

In previous years, Ms Hatkoff adopted the role of buffer between her sister and the rest of the world, especially during the holiday season when music, bright lights and large crowds would cause Susan extra distress. 

Despite Susan’s discomfort with the unfamiliar faces and sounds around her, Ms Hatkoff said they were able to communicate with a sort-of ‘sister telepathy.’ And Ms Hatkoff was able to provide comfort when she sensed Susan was overwhelmed on busy days like Christmas. 

Ms Hatkoff told DailyMail.com: ‘I’d be careful to kind of sense how she was feeling. I’d put my arm around her, hold her hand, or, if I detected that she was becoming uncomfortable, we could either lower the music, or if there were holiday lights, we could lessen the stimulation.

‘She was part of the activities, but we tried to be sensitive, softening the environment in the activities to help her stay calm and she, most of the time, could kind of go with the flow.’

Eleonora Tornatore-Mikesh, CEO of an organization called CaringKind that trains and assists caregivers of loved ones with Alzheimer’s disease, told DailyMail.com: ‘Treasure and enjoy all of the lucid moments.

‘There are so many people with Alzheimer’s disease that have taught us that life is beautiful, even with the dementia diagnosis, and they try to find all of those beautiful moments.’