Remember that Dementia can affect each person differently
“If you have met one person with dementia, then you have met one person with dementia.”
— Professor Tom Kitwood, University of Bradford, United Kingdom – Person-Centered Dementia Care
Dementia may mask the unique characteristics, abilities, interests, preferences and needs of a person, but it can never remove them completely. A person living with dementia does not cease to be the person they once were.
Four things to know about dementia:
- Dementia is not just about memory loss.
- Dementia is not a normal part of aging.
- Dementia is caused by diseases of the brain.
- People can still live a good life with dementia.
Alzheimer's Society UK
Dementia is not a specific disease. It is a general term for loss of memory, language, problem-solving and other thinking abilities that interfere with everyday activities.
Stages of dementia
According to the Alzheimer’s Association, Alzheimer’s disease typically progresses slowly in three stages: early, middle and late (sometimes referred to as mild, moderate and severe). Since Alzheimer’s affects people in different ways, each person may experience dementia symptoms and progression differently.
Early stage/mild Alzheimer’s disease
In the beginning, those with dementia are generally still able to function on their own and live an independent life. Your caregiving responsibilities will be minimal. Helping with organizational tasks such as managing finances or keeping track of medications may be necessary. If future plans are not in place, this is the time to get all legal, financial and end-of-life plans arranged. Your loved one will still be able to participate in the decision-making process.
Common difficulties in the early stage include:
- Coming up with the right word or name.
- Remembering names when introduced to new people.
- Having difficulty performing tasks in social or work settings.
- Forgetting material that was just read.
- Losing or misplacing a valuable object.
- Increased difficulty with planning or organizing.
Middle stage/moderate Alzheimer’s disease
This will be the longest stage and can last for many years. In the middle stages, folks will have more trouble expressing what they are thinking and more difficulty performing day-to-day activities. They may also experience changes in behavior and personality, such as anxiety, depression, agitation, issues with sleeping, hallucinations and delusions, and verbal outbursts. The caregiving responsibilities will be more time-consuming. Helping with activities of daily living such as bathing, dressing, preparing food, eating and/or using the bathroom will be common. Your loved one will need regular supervision; someone to be with them most of the day to make sure they are safe.
Common difficulties in the middle stage include:
- Being forgetful of events or personal history.
- Feeling moody or withdrawn, especially in socially or mentally challenging situations.
- Being unable to recall information about themselves such as their address or telephone number, and the high school or college they attended.
- Experiencing confusion about where they are or what day it is.
- Requiring help choosing proper clothing for the season or the occasion.
- Having trouble controlling their bladder and bowels.
- Changes in sleep patterns, such as sleeping during the day and becoming restless at night.
- An increased tendency to wander and become lost.
- Personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like handwringing or tissue shredding.
Late stage/severe Alzheimer’s disease
During the late stage, as things progress, your loved one will need intensive, 24-hour care. Folks in this stage may lose the ability to speak, lose control of their bowels and bladder, and lose the ability to move. At some point, swallowing becomes difficult. Although your loved one may not be able to initiate engagement, they can still benefit from interacting with you in other ways such as listening to relaxing music, gentle touch or massage, being read to, etc. Your caregiving responsibilities will focus on preserving your loved one’s quality of life and dignity.
Common difficulties in the late stage include:
- Around-the-clock assistance with daily personal care.
- Loss of awareness of recent experiences as well as of their surroundings.
- Changes in physical abilities, including walking, sitting and, eventually, swallowing.
- Difficulty communicating.
- Vulnerability to infections, especially pneumonia.
You can never learn enough
“Education is a foundational element in supporting caregivers of persons with dementia by helping them understand the disease, obtain skills and knowledge to effectively respond to symptoms of the disease, and become familiar with resources and supports that are available,” says Jennifer Wolff, PhD, MHS, director of the Roger C. Lipitz Center for Integrated Health Care.
- Learn as much as you can about dementia. Look for reputable websites that have up-to-date information on dementia and Alzheimer’s disease. Sites include Alzheimer’s Association, Alzheimer’s Foundation of America, Alzheimers.gov or the National Institute on Aging.
- Attend online or in-person educational programs, such as those offered next month by UK HR Elder Care and the UK Sanders-Brown Center on Aging during Dementia Caregiver’s Week.
Join a caregiver support group:
1. UK HR Elder Care Caregiver Support Group, third Wednesday of every month.
2. Fayette County Early-Stage Dementia Support Group, second Tuesday of every month (UK Family and Consumer Science Extension, UK Sanders Brown Center on Aging and Alzheimer’s Association – to register call (859) 323-6380 or (859) 391-1227.
3. Alzheimer's Association has several local, regional and national online and in-person support groups.
- Take care of you. Aside from maintaining a healthy diet, exercise and sleep habits, it is important to stay engaged in the activities and relationships you find meaningful.
- Find a way to get away for an hour, a day, a weekend or a week. Respite allows you the time to rest and rejuvenate. Respite makes you a better caregiver.
Caregivers just want to provide the best care possible for their loved one. Having the necessary understanding, tools and support is an important part of being a caregiver. I hope you can join us for all or some for our Dementia Caregivers Week events.
Stay well, stay healthy, stay connected,