Solving a jigsaw puzzle can be confusing. There are many different pieces and the clues are not always obvious. It is often the same with dementia. The condition is puzzling to all those affected – both those diagnosed and their family caregivers. This is because dementia is not just one thing, it is many.
Unknowing family caregivers may quickly define a senior’s memory loss problems as dementia. Doing so can be an easy thing to do; however, pointing here is only partially correct. Family caregivers need to dig deeper, better clarify, and understand what specifically they are dealing with and how best to help. For a better visual, family caregivers could imagine dementia as an umbrella under which various types of dementias exist. Dementia characteristics can overlap which can easily lead to misunderstandings.
Here are some further facts about the various types of dementia:
Alzheimer’s Disease (AD)
Family caregivers will find this to be the most common type of dementia. My father was diagnosed with this condition, so I know it all too well. What began as seemingly innocent absent mindlessness with Dad (that the family liked to refer to as “senior moments”) progressed into a much bigger and more serious problem. While conditions for Alzheimer’s vary, family caregivers can see many similar responses.
Dad began by forgetting small and simple things. In the early stage of Alzheimer’s, he would routinely lose his glasses, rely more on written “to-do” lists, and repeat questions and stories. When moving into the middle stage, Dad forgot more of his shorter-term memories (e.g. his youngest daughter who lived elsewhere and couldn’t visit frequently), became increasingly disoriented, struggled with speaking, and lost much of his balance, flexibility, and body strength. During his advanced Alzheimer’s, Dad became completely reliant on outside help from both his family and supportive long-term care home staff. I was appointed Joint Guardian and Alternate Trustee for him and was called upon to make decisions for him. At that point, Dad couldn’t recognize his own family nor recall his childhood or career.
As a family caregiver for Dad, I learned of the plaques and tangles which can occur in a senior’s brain and lead to Alzheimer’s disease. Plaques resemble a wall as protein molecules bunch together in the brain and block signals/messages from being received. Tangles prevent brain protein strands from remaining straight and can negatively affect nutrient flow. This can be like a maze where the route from start to finish is rarely direct. Another lesson learned was that Alzheimer’s disease can progress slowly or quickly.
My sisters and I cared for Dad for close to 10 years before he passed away. With that said, however, significant losses (e.g. the death of a spouse) or a major move may trigger a faster mental and physical decline in AD patients. In Dad’s case, we had to move him three times with his final home being a secured wing in a long-term care home. The lock on the facility door was necessary as wandering in seniors with Alzheimer’s Disease is common, especially at more advanced stages. Despite being under the watchful eyes of long-term care staff, seniors with Alzheimer’s may escape from the building wearing little more than a pair of pajamas or a nightgown. This can become dangerous in colder weather and family caregivers must rely on good Samaritans and/or the local police to return their loved one home. Long-term care homes can resort to other clever means of keeping their residents inside. With Dad’s home, the elevator doors to the Alzheimer’s wing were painted over to better disguise them.
Family caregivers may hear that AD is contagious; this is untrue. Those with Alzheimer’s can still live a good life, feel a family caregiver’s love, and benefit from the support of care strategies for Alzheimer’s disease.
Vascular Dementia (VD)
This is another common type of dementia with strokes often being the underlying cause. A stroke will limit blood flow to the human brain – think of a clogged water drainage pipe. Restricted water flow often leads to nasty flooding; however, blocked blood flow to the brain becomes far more serious as oxygen and nutrients cannot be delivered. If you miss a meal or go hungry, your body will not function properly; a starved brain will respond in a similar manner. Thus, a senior’s thinking will become fuzzy.
A doctor can explain that heart disease, diabetes, sleep apnea, and/or depression can also be contributing factors for Vascular Dementia. Much like seniors with Alzheimer’s disease, those with Vascular Dementia can be confused, have trouble speaking, misunderstand, and be unsteady on their feet when walking or standing. Two other common signs are abrupt headaches and facial/body paralysis. The side effects of blood clotting, higher cholesterol, and increased blood pressure can be controlled with medications.
Frontotemporal Dementia (FTD)
Frontotemporal dementia reduces a senior’s brain functioning abilities. Family caregivers may also hear this condition referred to as Pick’s disease. The brain’s nerve cells progressively shrink and become lost. As the condition’s name suggests, the two brain zones hit specifically are the frontal (behind the forehead) and temporal lobes (behind the ears). This is more of a younger senior’s dementia (hitting those aged 45 – 65) while Alzheimer’s often strikes much later. What can make this form of dementia more mysterious and difficult to identify is that affected seniors may appear to be functioning more normally for longer periods of time.
An exact cause for FTD has yet to be pinpointed as well. Doctors can only conduct a series of tests, shortlist the problems, and watch for symptoms including memory loss, behavior changes, speech problems, and hallucinations, all of which may be delayed until the later stages. Additionally, FTD patients are likely to remember more and remain oriented; this can effectively trick a doctor into believing nothing is wrong. Like Alzheimer’s disease and Vascular dementia, there are medications that may help to treat various side effects experienced by a senior. It is best for family caregivers to seek advice from a doctor about their concerns.
This condition resembles a dam on a river. The dam blocks the water from flowing. With Lewy-Body Dementia, Lewy bodies (or small protein particles called alpha-synuclein) clot brain neurons and cause them to fail. Instead of river water not flowing through, important messages do not run to and from the brain. Therefore, the brain does not receive the necessary information, understand what to do, or know how best to respond. The resulting symptoms, as explained by The Lewy-Body Dementia Association, are much like those in other dementias:
- Impaired thinking. A person with Lewy-Body Dementia will lose memories and become unable to process information.
- Movement problems. General body stiffness, tremors, and walking difficulty.
- Visual hallucinations. The senior may see other people or things that do not exist. Hallucinations may also extend with the senior hearing or tasting something that isn’t there.
- Mood changes. Depression, apathy, anxiety, agitation, and paranoia are often witnessed with seniors with Lewy-Body Dementia.
As with other types of dementia, your doctor can tell you more. Medical testing often includes complete neurological and physical exams, a mental abilities assessment, and bloodwork. A more thorough MRI / CT scan or a heart test may also be required. While your doctor may diagnose Lewy-Body Dementia, family caregivers need to understand this will not be conclusive.
Medication may help slow the advancement of Lewy-Body dementia; however, it will not completely cure a senior. A doctor may prescribe a cholinesterase inhibitor (e.g. Donepezil or Aricept). Before starting a senior on one of these medications, family caregivers should question the side effects (or even possible side effects) as well as any potential conflicts with other medication a senior may be taking. Finding the right medication and dosage may require some trial and error as well.
While there are similarities between Lewy-Body dementia and Alzheimer’s disease, Lewy-Body dementia may become more serious. Researchers from the American Academy of Neurology found that stricken seniors often have worse physical and mental health and a greater disability. This further deterioration – along with a worsened quality of life – can usually be seen two years after the onset of Lewy-Body dementia.
Any dementia can have unfortunate consequences. One case of Lewy-Body dementia led to untimely news headlines. Highly acclaimed actor and comedian, Robin Williams, was hit with this disease (this was in addition to Parkinson’s). His widow explained that Williams became overwhelmed by paranoia and could not remember his lines in acting roles. Becoming so troubled while still being cognitively aware is understandable - imagine losing the ability to do something that had once come so easily to you. Williams had pursued several avenues to try and help himself (including medication, exercise, better diet, etc.) but nothing worked. Feeling that there was no other recourse, Williams chose to commit suicide at just 63 years old.
My mother was diagnosed with Parkinson’s disease. While this condition is not fatal, I still like to refer to it as an inconvenience. Mom – always fiercely independent – gallantly fought the increasing limitations of the disease but grew frustrated that she could no longer do what she wanted to do. As one example, I recall when the care staff at Mom and Dad’s senior’s apartment found Mom in the stairwell. There was no explanation needed…we knew that she had stubbornly determined that she could tackle the eight flights of stairs but found out it was a much harder task than she had imagined due to her weakened condition.
In addition to losing strength and/or stamina, Parkinson’s patients are otherwise affected by:
- Decreased flexibility. This was quickly evident to my sisters and me as our mother didn’t often fully shoulder check when she was driving.
- Increased tremors and reduced gripping strength. Mom’s hands would suddenly shake when she was sitting or reaching out. Grasping and holding onto even small objects was challenging; Mom would often drop items on the floor. In due course, we found a “reacher” helpful. This was an extendable rod with fingers that could be opened and/or closed around an object to lift, carry, or move it. “Reachers” can be purchased from senior health supply stores.
- Handwriting difficulty. We also noted Mom’s handwriting became smaller and much harder to decipher. She struggled to write in a straight line and crowded her words together.
- Speaking volume. Mom’s voice softened to almost a whisper. We considered taking her to a speech therapist but never had the opportunity.
Other symptoms of Parkinson’s disease may include rigidity, bradykinesia (slow movement), and postural instability (balance problems). Physicians examining a senior and observing two or more of these symptoms often diagnose Parkinson’s disease.
Human non-motor skills can also be affected by Parkinson’s disease. The Parkinson’s Foundation identifies other early signs including the following:
- Loss of smell. It may seem hard to imagine, but a person with Parkinson’s disease may lose this sense and be unable to identify even stronger smelling scents.
- Trouble sleeping. Some tossing and turning while in bed overnight is normal. Uncontrollable shaking, flailing about, accidental hitting of a partner in bed, or bad dreams/nightmares can be more problematic.
- Trouble moving or walking. This would result from a combination of reduced muscle strength, flexibility, and balance – all of which may be negatively affected by Parkinson’s disease.
- Constipation. It’s never a pleasant subject of discussion but being unable “to go” (regularly, smoothly, and/or painlessly) may point to a problem.
- “Blank” face. Has your loved one lost his/her familiar smile and, instead, seemingly stares into space and seems unresponsive? Facial expressions (e.g. smiling, frowning, and laughing) all require facial muscles which can be compromised from Parkinson’s disease.
- Dizziness or fainting. Feeling light-headed after getting out of bed or standing up from a chair can suggest Parkinson’s disease. Often, this problem stems from low blood pressure and can be a good reason to see a doctor.
- Stooping or hunching over. With weakened body muscles, a senior with Parkinson’s disease may be unable to hold him/herself upright while sitting or standing.
Treatment for Parkinson’s disease include medication (which increases the brain’s level of dopamine), physiotherapy, and speech therapy. Boxing is also proving to be good therapy for those with Parkinson’s. To help with his diagnosis of Parkinson’s disease, a friend of mine’s husband has taken up the sport and enjoys stepping into the ring. Doing so provides good physical exercise, builds muscle strength, and improves eye-hand coordination. Music therapy for seniors with Parkinson’s has also shown to be beneficial in increasing movement and coordination.
Other Types of Dementia include Mixed dementia, Wernicke-Korsakoff Syndrome, and Creutzfeldt-Jakob Disease. Please watch for further discussion and clarification of these conditions in future Caregiving Collection blogs.