Are you a caregiver for a loved one with dementia? Are you employed as a caregiver for someone with dementia? Do you know someone who has dementia? Odds are, you at least know someone who knows someone who has dementia. But, do you really know what dementia is? Do you really understand dementia and how to help individuals with dementia and their caregivers?
Dementia is not a disease in itself; rather, it is a set of symptoms that are part of a progressive illness. Dementia includes the symptoms of cognitive deficits, memory disorders, personality changes and decreased reasoning skills and deficits in judgment. These symptoms of dementia are usually severe enough that they impair the persons ability to deal with their ADLs (Activities of Daily Living). Their daily activities such as dressing, bathing, eating, toileting, homemaking, dealing with finances, etc.
The most common disease associated with the symptom of dementia is Alzheimer’s, which is a degenerative neurological disorder, along with Parkinson’s, some types of Multiple Sclerosis and Huntington’s Disease, to name a few. These diseases are progressive and get worse over time. Other causes of dementia are vascular disorders, such as from strokes; traumatic brain injuries from falls, accidents, sports injuries (ex: concussions from football, boxing, etc.) among others. Infections of the central nervous system, such as meningitis or HIV; long-time alcohol and/or drug use and/or abuse.
Dementia’s can be reversible or irreversible. About 20% of cases are reversible which include those of alcohol and drug use/abuse, vitamin deficiencies (vitamin B12), urinary tract infections, tumors, dehydration, hypothyroidism, HIV and low blood sugar, to name a few. With these situations, the individual can get very confused and forgetful. Testing can show deficiencies and treatments can be started. The irreversible causes are from the degenerative neurological disorders of Alzheimer’s, Parkinson’s, Vascular dementia and Lewy Bodies Dementia.
Everyone reacts differently with dementia. There are different stages, however, these are to be used as guidelines. Some individuals may somewhat follow these stages and others may not. These stages are according to The Alzheimer’s Association and include:
Stage I: No impairment. No symptoms, but tests may show dementia.
Stage 2: Very mild decline. Slight changes in behavior, but still independent.
Stage 3: Mild decline. Changes in thinking and reasoning, repeating, difficulty remembering recent events. Word-finding difficulties.
Stage 4: Moderate decline. Difficulty making plans with increased difficulty remembering recent events; difficulty dealing with finances.
Stage 5: Moderately severe decline. Forgets names, phone numbers, difficulty with time of day, difficulty with activities of daily living.
Stage 6: Severe decline. Forgets spouse’s name, family names, difficulty with eating and toileting. Changes in mood and personality.
Stage 7: Very severe decline. No communication, cannot walk, mostly bed-bound. Need assistance with most care.
The chance of getting dementia does increase with age, but, it is not a normal part of aging. It is not curable, but there are things you can do to help the fight against dementia. There are new tests and medications that, although, do not cure dementia, can slow down progression.
The statistics are scary and true. According to Medical News Today, there are an estimated 47.5 million dementia sufferers worldwide. About 5-8% of adults over 65 have some form of dementia. This percentage increases with age with the proportion rising to about a third of people aged 85 and over. One new case of dementia is diagnosed every 4 seconds! Alzheimer’s accounts for 60-80% of all causes of dementia. Dementia mostly affects older people, however, there is a dementia affecting individuals as young as 30’s, know as early-onset dementia. This is much less common and is genetic.
Symptoms of dementia can start up to 10 years building up. Symptoms may start very slow, with the individual making changes to their lifestyle. My mom used to love talking on the phone. All of a sudden we noticed she never answered the phone. She always had an excuse, a good one at that, as to why she couldn’t get the phone. The real problem was, she didn’t know what to do or say. She wasn’t always sure who the person was calling and didn’t know how to respond. She would usually give the phone to my dad until one day she just didn’t answer it anymore. People with beginning stages of dementia are amazingly good at hiding and manipulating a situation or answers to questions to hide their confusion and forgetfulness. My mom always had a reason behind your forgetfulness, and it was usually a pretty good one.
Some other symptoms of dementia are: Recent memory loss, where they ask the same question over and over and over again. You may notice them having an increasing difficult time completing familiar tasks they normally did without a problem. Communication problems will start with word-finding difficulties or using the wrong words and withdrawing from social interactions. They will become disoriented and lose their way in a familiar area, forgetting how to get home from the grocery store they have been going to for 50 years. Problems with abstract thinking such as dealing with finances, writing checks for bills or giving away money to people they may not even know. Mood changes also become more apparent, along with personality changes with irritability, becoming suspicious or paranoid and fearful, usually because of not knowing what is going on, where they are, who people are, etc. With all this, comes their loss of initiative to do anything or be with family, friends, etc. Think of these symptoms and feel the fear they must be going through. This will help you to understand where they are coming from and why they act the way they do at times. Put yourself in their shoes. Just keep answering their questions simply and calmly.
With this confusion and forgetfulness, they will have lucid times. Enjoy those times. I will be getting into more of this in a later blog and “dementia prevention.”
This blog is meant to help educate you in what dementia is and symptoms. This can help you to help them. Watch for further blogs on coping with dementia, “dementia prevention,” how to work with difficult behaviors and how to communicate and make the most out of your time with your loved one. Give them hugs, tell them you love them. They are in there and they can feel your love and support.
A couple books I think are wonderful to help you understand your loved one:
The 36-Hour Day by Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH
Before I Forget by B. Smith and Dan Gasby