UTHealth Consortium on Aging provides handbook for families and caregivers of those navigating a dementia diagnosis

For many people, dementia creeps in, taking a memory here, the ability to do an ordinary task there, a name or place that used to be able to be recalled with ease. And the journey is different for everyone.

Now, a free handbook written to help people navigate first steps after diagnosis of dementia is available from experts from The University of Texas Health Science Center at Houston (UTHealth) Consortium on Aging.

“When patients – and their loved ones – first get the diagnosis of dementia, regardless of the type, they are in shock. They think, ‘Now what?’” said co-author Karen Kaplan. “We compiled the handbook as the answers to their initial questions, a map out of the foreign land in which they have just found themselves.”

The handbook covers the entire subject of dementia, including signs to look for, treatment options, the importance of combating against polypharmacy (overmedicating), and support resources for the patient, their caregivers, friends, and family.

“Hearing the diagnosis of dementia can be very scary and confusing. This handbook is designed to be read soon after the diagnosis is rendered to help dispel myths and utilize information to combat fear,” said Carmel B. Dyer, MD, the executive director of the Consortium on Aging. She is also professor of geriatric and palliative medicine and the Roy M. and Phyllis Gough Huffington Chair in Gerontology at McGovern Medical School at UTHealth, and the Nancy P. and Vincent F. Guinee, MD, Distinguished Chair at UTHealth.

According to the World Health Organization, in 2018, there were an estimated 50 million people living with dementia. Cases are expected to triple by 2050, with about 8 to 10 million new cases diagnosed each year, and 1 in 5 women and 1 in 9 men will develop the disease.

Most people are familiar with Alzheimer’s disease, which makes up 70% of all dementia cases, but the book lists several forms and causes of dementia that people may not recognize:

• Vascular dementia
• Frontotemporal dementia
• Dementia of Parkinson’s disease
• Lewy body dementia
• Normal pressure hydrocephalus
• Huntington’s disease
• Dementia from medical problems due to reversible causes like hypothyroidism and vitamin B-12 deficiency
• Dementias that are secondary to certain advanced disease states such as syphilis or Lyme disease
• Dementia rising from chronic drug and alcohol use

Dyer is hopeful that the information in the handbook will help those facing the disease to maintain a higher quality of life. “The goal is to arm people with a better understanding of dementia so they can address their own needs, or the needs of their loved ones, with confidence and determination,” she said.

Education about dementia is important not only for the individual coping with the disease, but for family and friends around them. Contact information for UTHealth Neurosciences, the UT Physicians Psychiatry Outpatient Clinic, UT Physicians Center for Healthy Aging, and the Harris County Long-Term Care Ombudsman Program at Cizik School of Nursing at UTHealth are included in the handbook for anyone looking to gather additional information.

The handbook also discusses and lists things to consider when determining if it is best to continue with home care or move a loved one to a residential care option.

Some of those questions are:

1. Is your loved one in need of more than you (and intermittent hired care) can give to maintain his or her current health?
2. Does your insurance provide for long-term care or assistance?
3. Is your loved one escaping the house, wandering, or hallucinating?

Adriana Franco, Houston district director for Adult Protective Services, thinks information to determine when it might be too much for an individual to care for a family member or friend with dementia on their own is vitally important. “It would be ideal if this handbook plays a part in preventing a case coming into Adult Protective Services because a client is in a state of abuse, neglect, or exploitation due to their dementia,” she said.

Kaplan co-wrote the handbook with former UTHealth faculty member Garima Arora, MD. Kaplan is a member of the UTHealth Consortium on Aging Executive Committee and a medical writer who retired from UTHealth in 2019.

Bettye Mitchell, director of the Area Agency on Aging of East Texas, is excited to share the handbook with the individuals she works with, not just for the information included in it, but for the peace of mind it will be able to provide.

“I hope individuals who read this handbook come away with a greater understanding of the signs and symptoms of dementia, and what help is available for individuals with dementia, but also a sense of hope and encouragement that they now have a resource to navigate the road ahead,” Mitchell said.

The handbook can be accessed online at https://online.fliphtml5.com/qsbv/oler/.

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