Glossary of Terms
Advance Directive: A legal document stating your wishes should you be unable to make your choices known about your health. The most common types are the Living Will and Durable Power of Attorney. The Living Will is used to guide others regarding how much treatment and what kinds you wish to receive. The Durable Power of Attorney for Health Care ( sometimes called Medical Power of Attorney) is a document naming a proxy to make health care decisions for you. Seeing an attorney for help setting up an Advance directive is highly recommended.
Alzheimer’s Disease (AD): A brain disease that leads to dementia symptoms, affecting memory, thinking, and behavior. It is the most common cause of dementia, accounting for 60%-80% of dementia cases. Dementia is a group of symptoms, while Alzheimer’s is a disease. There is often confusion about the difference between Alzheimer’s and dementia. See also: Dementia.
Anosognosia: A lack of ability to perceive the realities of one’s own condition. It is a person’s inability to accept that they have a condition that matches up with their symptoms or a formal diagnosis. Many dementia patients believe that they are healthy and competent. It can be helpful for the caregiver to understand that efforts to convince someone of their dementia will most likely result in anger and frustration.
Anticipatory Grief: Grief that occurs before death (or other great loss) in contrast to grief after death (conventional grief). Anticipatory grieving is common among caregivers and yet many don’t like to acknowledge it, as they feel it may indicate that they have given up hope. There is no shame in this type of grieving. Keeping silent about it will lead to feelings of isolation and anxiety.
Breathing: Conscious Breathing is the practice of becoming aware of your body through the awareness of each inhale and exhale. It is one of the fastest and most reliable ways to calm the nervous system.
Caregiver Burnout: A state of physical, emotional, and mental exhaustion. It may be accompanied by a change in attitude, from positive to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need or try to do more than they are able, physically, emotionally, or financially. Also, see Compassion Fatigue.
Care Partner vs. Caregiver: The term care partner indicates an agreement between the person with the chronic condition and their loved one to be partners in care as best as they can. This is usually part of a life commitment. A caregiver may also be caring for a partner, spouse, or loved one. These terms are somewhat interchangeable, however professional caregivers are paid and not referred to as care partners.
Chit Chat: A term coined by Teepa Snow, indicating the brain’s right side in dementia. As dementia progresses, the right side of the brain retains the ability to make small talk at any given moment. The right brain also keeps all the socially unacceptable language that we have accumulated over time. As dementia progresses, a person often blurts out racial slurs, sexual talk, or may use language that many of us find horrifying.
Coach for Caregivers: A professional who helps clients realize their fullest potential as humans, not just caregivers. There is generally a step-by-step focus on setting and achieving goals. A life coach should be accredited and willing to share her work history. A therapist focuses on mental health issues vs. a coach who focuses on your empowerment.
Comorbidity: The simultaneous presence of two chronic diseases or conditions in a patient. People living with dementia are every often living with one or more other chronic diseases.
Compassion Fatigue: A profound emotional and physical wearing away occurs when caregivers cannot refuel and regenerate. Compassion Fatigue is much more complicated than being tired or overworked. Those who suffer from this may eventually become preoccupied with thinking of their loved one, aging, and death. Compassion Fatigue may be an indication of a conflict between our deepest values and the work we are required to do. Also, see Caregiver Burnout, Moral Distress.
Delusions: Firmly held beliefs in things that are not real. Delusions may become common in mid to later stage dementia. Paranoia is a part of being delusional as the person tries to make sense of his/ her world. A delusion is not the same as a hallucination. While delusions involve false beliefs, hallucinations are false perceptions of objects or events that are sensory. Try not to take it personally when your loved one has delusions or paranoia. They are not personal. Also, see Hallucinations.
Dementia: A group of symptoms associated with a decline in memory, reasoning, and thinking. Dementia is not a disease. There are many causes of Dementia with Alzheimer’s being the most common. See also-Alzheimer’s
Dysphasia: A term for swallowing difficulties. Dysphasia can become common in later stages of dementia. Some symptoms may include holding food in the mouth, drooling, continuous chewing, or loss of muscle control in the throat due to damage in the brain that controls swallowing. A speech therapist can sometimes help.
Early Onset Alzheimer’s: Also known as Younger-Onset. Up to 5% of Americans who have Alzheimer’s are under the age of 65. Many are in their 30’s, 40’s, and 50’s. Early dementia is unknown, but studies may show evidence of a familial gene being passed along. Also, see Alzheimer’s.
Fiblet: A therapeutic intervention. It is a small lie to reassure one who is upset, anxious, or confused.
Fight, Flight, Freeze Response: An automatic response of the nervous system to perceived danger. When we feel threatened or afraid, our brain sends out stress hormones; we react without thought. As early humans, we evolved this response to survive. Today, as caregivers, we activate this response (and the hormones) with endless daily stressors. It is essential to be aware of when you feel the sensation of wanting to fight, run, or shut down.
Frontal Lobe Dementia: This is also known as Frontotemporal Dementia. This form of dementia happens when the frontal lobes of the brain begin to shrink. Frontal Lobe Dementia often presents at a much younger age than AD. (45 -65 years). The frontal lobes in the brain are responsible for help with regulating our inhibitions and behaviors. People with this dementia often exhibit odd behavior or personality changes. There is no single test for this dementia. Frontal Lobe Dementia is a difficult disease to diagnose. In later stages, it becomes easier to distinguish from other dementias.
Geriatric Care Manager (GCM): A specialist who assesses a person’s mental, physical, environmental, and financial conditions to create a comprehensive care plan. Care managers strive to ensure more favorable outcomes, handling issues such as coordinating with doctors, overseeing in-home care, and much more. Medicare does not generally cover private Geriatric Care Managers, but a GCM may save costs over time. Search for referrals locally or listings at Caring.com
Grief: See Anticipatory Grief
Hallucinations: Seeing or sensing things that do not exist. Visual hallucinations can be as simple as seeing lights to more complex, such as seeing animals, people, or strange situations. Hallucinations are more common in Lewy Body and Parkinson’s disease dementia but can occur with any dementia. In some cases, there is a misperception of what the patient is seeing. Visual misperception is not a hallucination or a delusion, but damage to the optical system. Also, see Delusions.
Home Health Aide (HHA): A trained and certified health care worker who assists in your home. They usually help with hygiene, exercise, and meal prep.
Home Health Agency: A company or non-profit, other approved by Medicare to provide health-related services. These may include nursing, personal care, occupational, or speech therapies.
Hospice Care: Comfort care offered to every patient, whether in a private home, assisted living, or hospice house. It is for all people with advanced illness. Most hospice patients will have the cost covered by Medicare. Qualifications must be met by closely working with the doctor. Medications are available, but generally only to manage comfort. Hospice provides home medical equipment such as oxygen tanks, hospital beds, toileting supplies, etc. There is NO commitment to investigating Hospice Care before it is needed. Also, see Palliative Care.
Lewy Body Disease: This is a form of dementia that results from abnormal protein deposits (Lewy Bodies) in the brain. It can occur by itself or coincide with Alzheimer’s or Parkinson’s. This disease usually progresses quickly. Along with the usual symptoms of dementia, this also commonly includes hallucinations. There is no single test for diagnosing this. See also: Alzheimer’s and Dementia.
Life Coach: See Coach for Caregivers
Meditation: A practice using techniques for focusing the mind on a particular object, thought, or activity (like breathing!). Meditation can help with reducing stress, anxiety, depression, and pain. Also, see Mindfulness.
Mild Cognitive Impairment (MCI): A term for cognitive changes that are serious enough to be noticed by friends and family but do not affect one’s ability to function. MCI may lead to Alzheimer’s but not necessarily. In some cases, MCI will revert to normal cognition. In other cases, the cause may be an underlying condition or a needed adjustment in medication. Check with a doctor.
Mindfulness: The practice of bringing our attention to the experience occurring in the present moment without judgment. We can achieve mindfulness by practicing Meditation and Self-Compassion. A state of mindfulness is beneficial, not only to our emotional health but also our physical health. Also, see Meditation.
Mixed Dementia: A combination of two or more types of dementia.
Moral Distress: A psychological distress regarding a moral obligation. It was a term initially applied to professional carers but now is recognized to extend to family caregivers. Our values become conflicted with what we can do for our loved ones. Also, see Compassion Fatigue.
Music as Medicine: Music can be excellent medicine for a person with dementia. It can re-focus, calm, or cheer your loved one. There are many studies on the value of music for dementia.
Palliative Care: A program focusing on those with a long term illness who want to improve their well-being while suffering from a serious illness. Palliative Care offers a support system for the patient and family. Palliative professionals will guide you toward the time when Hospice could be an option for your loved one. With Palliative Care, the patient may continue with life-prolonging treatments. Medicare generally covers both Palliative Care and Hospice Care. Also, see Hospice.
Self-Compassion: Acting the same toward yourself as you would any other who is suffering.
ShowTime: A phenomenon that occurs when dementia patients suddenly can put on a convincing show of normalcy for a short period.
Sundown Syndrome: An increased state of confusion that occurs later in the afternoon and into the night. It includes increased confusion, anxiety, agitation, and sleeplessness. Sometimes it leads to pacing or wandering. The exact cause is unknown. Be sure to check with your loved one’s doctor to rule out underlying physical conditions that may exacerbate the sundowning.
Testing for Dementia: Tests may include exploration of various medical conditions, medical history, Neurological exam, extensive lab work, brain scans, psychiatric evaluation, genetic testing. Some medical conditions may resemble dementia and are treatable. Dementia is a group of symptoms caused by certain conditions and diseases. Also, see Dementia.
Vascular Dementia: Also known as MID (Multi-infarct Dementia). A series of tiny strokes cause vascular dementia. MID is the second most common cause of dementia after Alzheimer’s disease. Strokes cause blood flow to stop. When this happens for more than a few seconds, the brain does not get enough oxygen, and blood cells begin to die, causing permanent damage. Also, see Dementia.
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