I'm hearing from numerous members in my support groups that Doctors are not doing anything to help educate caregivers. They are just saying" he or she likely has dementia. Here's a prescription." Caregiver's are left frustrated and frightened. Memory Clinics are overwhelmed with referrals and the caregivers fear for their partners, or other family member and for themselves. LTC's have huge waiting lists and staff need more training on dementia care. There is a great need for LTC that are dementia specific. Others are telling us how the diagnosis is more often depression. I went through that myself but because of my mother's dementia I was very suspicious and insisted on dementia testing. Guess what!! Not depression. Three dementia's. How do we educate these Doctors that are just poo pooing a concerned family member? We don't have medical training. We need guidance, compassion and care. We need to be educated so we can care for our loved ones with even a bit of confidence. Stigma!! Mental illness they say. This is what we get. This is a disease. Cancer eats at the organs within our body even the brain. This disease destroys the brain and the body as well. Just a different form. NO CURE. Doesn't that sound like a diagnosis of cancer years ago? I remember those times of heartbreak if a loved one was diagnosed with that dreaded word" CANCER". NO CURE!
Jazzy, I'm sure all of the members at joan's share your frustrations. After all the testing on my husband, the neurologist gave him a prescription for Namenda, told me to buy pepper spray in case he got physically violent again and sent us on our way. Not even a discussion about dementia or that he had it (I figured out that was most likely the diagnosis when he prescribed the Namenda). Two days later I called the doctors office and his nurse told me the dx was "pre-senile dementia". When I asked if it was Alzheimer's she said "not necessarily" and the call ended. I didn't know enough about dementia at that time to be frightened, but I certainly was frustrated.
I believe every medical school should have required courses on dementia and all interns, no matter what their specialty should do a tour in a geriatric assessment center. I would also like to see the renown memory centers hold more symposiums and outreach to the medical community and the caregiving community, both professionals such as LTC workers and family members.
Of course the main reason there's not more education and training available is due to the lack of funding by the government and private foundations. There needs to be a lot more money available for research, education, caregiver support, LTC facilities, etc. AND we who are in the trenches need to find ways to advocate and publicize the plight of the families. Look how the gay community rallied and demanded treatments be developed for HIV/AIDS. We need to do the same.
At the very least, when the PCP tells you it's "dementia", they need to follow that up with a referral to the best neurologist or neurology center around...to eliminate whatever it isn't, and get a definitive diagnosis of what it is. (AD, Lewy Body, vascular dementia...whatever.) I agree with others who have said they eventually canned the neurologist and just used the PCP for the Alzheimer's journey--I did the same thing---but the first step has to be to get the right diagnosis, so you know what you're dealing with.
Jazzy At the Alzheimer's forum this year, there is the Hope Act, that we are trying to get congress to pass. It is all about what you are talking about. I had the same problem. My DH and I heard, you are to young, you are stressed and depressed. Now that DH is in LTC, I am finding where he is and anywhere I want to move him there is lack of training. In Georgia they are required 24 hours of training and only 8 to dementia care. That's not enough. We all have had on the job training in dementia care for years. I am still learning everyday about my DH's symptoms, behaviors and what's coming next. I am having trouble finding a facility that can take care of him. The Memory Care facility where he is said they would like them to be verbal preferably. I thought really, do you think they will stay that way. At a meeting with the head of the facility, the head nurse, and the manager over the MC, we thought their assessment of what their requirements were to be a resident, would eliminate our LO. Facilities are popping up all over the place and large corporations are buying them out for big chains. They have no idea what they are doing.
The facility my DH is in, has been open over one year, and still has not done the required training of its staff. They did not even have a procedure book until we all complained. There is no over site of the facilities. The ombudsman in my state that do that, are stretched to the point of 1/24,000 people. The laws that state staffing ratios need changed. It is now 1-15, 1 CNA to 15 residents. That is in a MC unit not NH. But try to find a NH anywhere near me. Can you image the turnover. I cannot imagine 1 person taking care and watching 15 people with dementia.
Maybe if they changed Alzheimer's and other dementias to 'brain cancer' it would get more attention and be taken more seriously by those in Washington to send more money. We all know it is cheaper in the long run to find the cause/cure than just keep treating the with the disease until they die.