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Welcome to our curated list of resources for families and professionals seeking education and support and resources related to Alzheimer’s, dementia, Lewy Body dementia, Parkinson’s disease, and Frontotemporal Dementia. These organizations provide comprehensive information, assistance, and support networks to aid those directly affected by these conditions and their caregivers. Explore the links below to find valuable resources tailored to meet your needs.

Alzheimer’s Association:

Offers information on Alzheimer’s disease and dementia symptoms, diagnosis, stages, treatment, care, and support resources. Website: www.alz.org

Alzheimer’s & Related Dementias Education & Referral (ADEAR) Center

A service of the National Institute on Aging at the National Institutes of Health, providing information and support for people with Alzheimer’s Disease and related dementias. Website: www.alzheimers.gov 

Alzheimer’s Foundation of America (AFA)

Provides support, services, and education to individuals, families, and caregivers affected by Alzheimer’s disease and related dementias. Website: www.alzfdn.org

Dementia Society of America

Offers information support and research for all causes of dementia, recognizing caregivers and innovators in the field. Website: www.dementiasociety.org

National Alzheimer’s and Dementia Resource Center (NADRC)

Provides technical assistance, educational webinars, and resources related to Alzheimer’s disease and dementia. Website: nadrc.acl.gov

Alzheimer’s Disease International (ADI)

A federation of over 100 nonprofit dementia associations around the world, providing a global network of support and resources. Website: www.alz.co.uk

Central Florida Lewy Body Dementia Support Group

A partner organization with the CERTUS Institute, offering resources on Lewy Body dementia. Website: www.cflewybody.org

Alzheimer and Parkinson Association of Indian River County

Provides dementia simulations, support groups, and information on Alzheimer’s disease and Parkinson’s disease. Website: www.alzpark.org

National Institute for Dementia Education (NIDE)

A professional organization offering education and training on dementia care practices. Website: www.nid.education

The Association for Frontotemporal Degeneration (AFTD)

Offers information, resources, and support for families affected by Frontotemporal Dementia (FTD), including a helpline and support groups. Website: www.theaftd.org

Frontotemporal Dementia Advocacy Resource Network (FTDARN)

Focuses on advocacy, support, and resources for individuals with Frontotemporal Dementia and their families. Website: www.ftdarn.org

Alzheimer’s & Dementia Resource Center

A local Florida organization providing education and support to caregivers. Website: www.adrccares.org

Copied

Creating Moments of Joy Along the Alzheimer’s Journey by Jolene Brackey

The Dementia Concept by Joshua Freitas

Joining Grandma’s Journey by Joshua Freitas

The 36-Hour Day by Nancy L. Mace and Peter V. Rabins

Alzheimer’s Disease: What If There Was a Cure? by Mary T. Newport

Learning to Speak Alzheimer’s by Joanne Koenig Coste

Learning to Speak Alzheimer’s by Joanne Koenig Coste

Dancing with Dementia by Christine Bryden

The Dementia Handbook: How to Provide Dementia Care at Home by Judy Cornish

Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End by Tia Powell, MD

Somebody I Used to Know by Wendy Mitchell

When Reasoning No Longer Works by Angel Smits

Activities of daily living (ADLs):

Personal care activities that are necessary for everyday life, such as eating, bathing, dressing, and using the bathroom.

Alternative therapies:

Techniques that are used for treatment instead of, or as a complement to, drugs, surgery, or other conventional interventions. Common alternative or complementary therapies include the practice of meditation, exercise, expressive arts, reflexology, massage, and acupuncture.

Alzheimer’s disease:

The most common form of dementia, which causes memory loss and damage to the hippocampus, where memories are stored.

Aphasia:

Difficulty recalling and formulating words. Loss of language ability. Mild aphasia refers to occasional difficulty with word recall. Moderate aphasia refers to marked difficulty with word recall. Extreme aphasia refers to word recall that is limited to a few words or the complete inability to recall words.

Creutzfeldt-Jakob disease:

A rare disease that is caused by an infection in the brain that  typically lead to rapid decline in memory and cognition. It is a rare type of dementia and there are different variations for the disease.

Cueing:

The process of providing cues, prompts, hints, and other meaningful information, direction, or instruction (such as adding labels to drawers) to assist someone with memory loss.

Delirium:

A state of confusion, which may cause a sudden change in cognitive functioning. Delirium can have physical causes, some of which might be overlooked, such as dehydration, infection (most commonly a urinary tract infection), pneumonia, and medication.

Dementia umbrella:

Dementia itself is an umbrella term that is used to describe various symptoms of a decline in mental ability. Alzheimer’s disease, Vascular dementia, and Frontotemporal dementia are examples of different types of dementia that are categorized within the dementia  umbrella.

Early-onset Alzheimer’s disease:

An uncommon form of Alzheimer’s disease in which individuals are diagnosed before age 65. Less than 10 percent of those with Alzheimer’s disease  have  Early-onset Alzheimer’s.

Experiential/Emotional Learning:

A type of learning that fosters focused attention through experiences. Experiential/Emotional learning physically changes the brain, increases social participation, and generates multi-sensory stimulation. This often occurs during life events that have experiential significance (e.g. attending a wedding, going to a concert, etc.).

Frontotemporal dementia (FTD):

A type of dementia that is categorized by the shrinking of   the frontal and temporal anterior lobes of the brain. There are two major types of FTD: one is characterized by speech problems, the other is characterized by notable behavioral changes.

Huntington’s disease:

An inherited, degenerative brain disease that is characterized by mood changes, cognitive decline, and involuntary movement of limbs.

Layering:

A self-securing behavior that involves unnecessarily wearing multiple layers of clothing.

Lewy body dementia (LBD):

A form of dementia that is associated with protein deposits called Lewy bodies, which form in the cortex of the brain.

Mild Cognitive Impairment (MCI):

Refers to memory problems that are noticeable to others. People with MCI may or may not have other cognitive problems. Those with MCI alone may be able to meet typical daily challenges without major difficulty. Some people with MCI progress to develop Alzheimer’s disease or other forms of dementia.

Mini-Mental State Examination:

A mental examination that is commonly used to measure a person’s basic cognitive skills, such as short-term memory, long-term memory, spatial orientation, writing, and  language.

Non-pharmacological:

Refers to a treatment approach that focuses on the social model (non-drug treatment) before the medical model. Non-pharmacological dementia care focuses on the simulation and interventions before using medication.

Novelty learning:

A type of learning that refers to learning new things, which creates new neural pathways throughout the brain that can bypass injured areas.

Pacing:

Aimless wandering, or walking back and forth, that is often triggered by an internal stimulus, such as pain, hunger, or boredom, or by some distraction in the environment such as an agitating noise, smell, or temperature.

Parkinson’s disease:

A progressive, neurodegenerative disease with an unknown cause characterized by the death of nerve cells in a specific area of the brain. People with Parkinson’s disease lack the neurotransmitter dopamine and have symptoms such as tremors, speech impairments, physical difficulties, and often dementia in later stages of Parkinson’s disease.

Pick’s disease:

A type of dementia in which abnormal amounts of certain proteins cause degeneration of nerve cells and shrinking of the brain’s frontal and temporal lobes. Pick’s disease causes dramatic changes in personality and social behavior but does not typically affect the memory until later stages of the disease.

Procedural/Physical Learning:

A type of learning that is achieved through exercise and behavioral tasks. Physical Learning can increase blood flow and foster more neural activity. Repetition of a physical action reinforces muscle memory, making physical tasks easier to perform over time.

Quality of life / Quality living:

A term that is used to rate a person’s ability to enjoy normal life activities. Quality of life is an important consideration in medical care. Some medical treatments can seriously impair quality of life without providing appreciable benefit, while other treatments greatly enhance quality of life.

Respite care:

Respite care provides temporary relief from caregiving tasks. Such care could include in-home assistance, a short nursing home stay or adult day care.

Sensory-based learning and sensory-based knowledge:

Learning that is achieved through the senses. This type of knowledge is governed by the amygdala and bypasses many of the misconceptions that a person with dementia can no longer learn. An example would be the use of subtle stimuli such as cinnamon or a red plate to increase appetite.

Service plan:

A written action plan that contains strategies for delivering care that addresses an individual’s specific needs and challenges. This service plan ensures a personalized approach to care and resident engagement.

A service plan will also consider the resident’s unique physical, psychological and social needs and preferences.

Short-term memory:

A system for temporarily storing and managing information that is required to carry out complex cognitive tasks such as learning, reasoning, and comprehension. Short-term memory is involved in the selection, initiation, and termination of information-processing functions such as encoding, storing, and retrieving data in the brain.

Stages:

A framework for the progression of dementia. There are currently a 3 stage, 5 stage, and 7 stage model of progression. Here at Certus, we us the 7 stage model to ensure person-centered approach.

Sundowning:

Unsettled behavior or increased agitation that is evident in the late afternoon, early evening, or overnight.

Trigger:

Something that either sets off a disease in people who are genetically predisposed to developing the disease, or causes certain symptoms to occur in someone who has a specific disease or condition.

Younger-onset:

Younger-onset (also known as early-onset) Alzheimer’s affects people younger than age 65. Many people with early-onset are in their 40s and 50s. They have families, careers or are even caregivers themselves when Alzheimer’s disease strikes.