I am one of 5 main carers to our mum along with my brothers and sister. Mum was diagnosed with Lewy bodies Dementia in 2005. Since then her decline has been rather drastic though her altertness fluctuates greatly from day to day. I have read and researched much on this illness since mum's diagnosis and this has been helpful in dealing and coping with mum, and the distress the hallaucinations which where and at times still are, horrific and detailed.
What is the prognosis of this illness? What can we expect? How long do we have mum as she is? My questions may sound morbid and i do not wish to portray this impression to any of you, but the need to know what's next is so great.
Can anyone help.
Good Morning Tanya,
Welcome to the LBD forums, I am glad you are self educating your self, it is so important, it allows you to help care for a Loved one with LBD.
You asked about what time frame is appropriate to plan for the
progressive levels. This is one of the first questions we all have
asked when faced with our loved one's diagnosis. Unfortunately there
is no one answer since every Lewy body dementia (LBD) patient is
unique. Although the areas of the brain affected are similar between
patients, the number of cells affected, which determines the
progression, varies greatly. This unknown makes it difficult, if not
impossible, to predict what lies ahead. The information available now
states the average duration is 5 to 7 years from diagnosis, depending
on several factors such as overall health, age, and severity of
symptoms. It is possible for the duration to be anywhere from 2 to 20
years. As caregivers, we have all learned that this disease has to be
taken day-by-day and we need to expect the unexpected. Planning is
sometimes replaced with enjoying whatever bits of quality time we can
share with our loved one. Many LBD patients eventually need a care
facility, either assisted living or a nursing home, and caregivers
have reported that by researching options and availability in advance,
it has provided an easier transition for both the family and their
LBD is a disease which may present itself with a wide variety of
symptoms and accompanying disorders. As each symptom or disorder
surfaces, the caregiver and medical professional must address them one
at a time making sure the treatment of one symptom does not negatively
impact the patient, or cause another symptom to worsen. There is no
way to predict which symptoms will present or the degrees of
progression with any one LBD patient.
What actually takes their lives. If there are no
accompanying diseases such as cancer, heart disease, or diabetes, then
we are left with the question which is a good one. Remember, every
patient is different and it is possible that none of this will apply
to your Mum.Pneumonia, weight loss, falls, surgery, and
medications come to the top of the list. As the disease progresses
various physical problems may lead to a battles with pneumonia to a
point when the family decides (based on their previous discussions
with their loved one) not to treat it. A patient may have a dramatic
loss of weight that can be caused by depression or perhaps dysphagia
(problems with swallowing) due to the affects of LBD on the autonomic
system. Weight loss is common and can lead to life-threatening events.
A feeding tube is an option and should be discussed in advance to
eliminate the distress that the decision can cause loved ones. Not
eating is sometimes a way for patients to give up after several years
with LBD. Surgeries due to falls or other ailments can have a negative
effect due to the impact of anesthesia on many LBD patients. We often
hear about how the patient was fine then after surgery there was a
progressive decline leading to death. And last it can be medication,
the very thing used to try and manage symptoms of the disease can have
a negative impact.
Neuroleptic sensitivity, in which striking and irreversible
parkinsonism can evolve shortly after use of neuroleptics, has led to
the recommendation that conventional neuroleptics should be avoided in
patients with Lewy body dementia (LBD). For example, Haldol is known
to cause life-threatening effects in a LBD patient. Neuroleptics have
caused severe adverse reactions such as cognitive reduction,
parkinsonism, heavy sedation, and neuroleptic malignant syndrome.
Even the newer 'atypical' neuroleptics may or may not work in any given
patient although there are some reports that Seroquel, Zyprexia, and
Resperdal have been successful in treating problematic hallucinations,
delusions, or agitation in patients. However, unless it is
contraindicated, cholinesterase inhibitors such as Aricept, Exelon, or
Reminyl are recommended as the best choice for initial treatment of LBD.
Is LBD reversible and the answer is no, it is not. Both
Parkinson's disease and LBD are Lewy body diseases named for the
abnormal protein collections called Lewy bodies that accumulate in