Claire
Lv 4
Claire asked in HealthMental Health · 9 years ago

How do you care for someone with dementia with lewy bodies?

Hi, do you know someone close to you who suffers from dementia with lewy bodies? How do you care for them? How do you deal with their changes of state (from "ok" to "losing it"?)

My dad has been diagnosed with Parkinson, and most probably with lewy bodies. He is only 71 and lives alone. I can see how things are getting really difficult for him now. His state deteriorates quickly.

What is your experience of that situation? Do people suffering from that disease need to finish their life in a special home? Do they need a carer to live with them constantly?

Thanks for any advice or suggestion about where I can find support. I live in the UK but my dad lives in France, my country of origin.

Many thanks

4 Answers

Relevance
  • Mags
    Lv 7
    9 years ago
    Best answer

    I am sorry to hear about your father's condition. Having Dementia with lewy bodies is bad enough but to also have Parkinson's disease makes for difficult choices.

    Which came first? The PD or the DLB? There is a difference in treatment because often DLB manifests with parkinsonian symoptoms and he may only have DLB but not PD.

    The dementia itself can create safety issues in the future and will ultimately preclude his ability to live alone. You will need to take action before the risk is too great and before he actually is injured.

    Your father will not be able to live on his own if, as you indicate, his condition is rapidly deteriorating. Having a carer or caregiver team might work if there are sufficient funds for their 24/7 presence. If not, the time will come for your father to be in a nursing care facility.

    With the basic problems of PD: TRAP - Tremors, Rigidity, Akinesis (or Bradykinesia - slowness of movement) and Postural Instability as well as all of the other possible symptoms of the disease including difficulty swallowing, gastrointestinal problems, urinary issues, cognitive decline, it is unlikely that as the diseases progress your father is safe living alone.

    At the final stages, many PD patients who have not already succumbed to falls, aspiration pneumonia or other related issues have so much body stiffness (and pain) that they are unable to care for themselves.

    You didn't mention his current course of medical treatment, alternative therapies, diet, nutritional supplements. The problem is that with dementia, there are few drugs that can halp for a prolonged period of time.

    If you have other family members, this might be a good time to meet with your father to discuss the options and the plans (including legal arrangements) for the future.

    I wish I could give you a better prognosis but at this time there isn't one based upon what you have told us. If you can, get clarification from his doctors about the diagnosis. It may affect your decisions or at least their timing.

    Here are a few sites to check:

    Read the caregiver comments at the site below

    http://www.ninds.nih.gov/disorders/dementiawithlew...

    http://www.lbda.org/

    http://www.mayoclinic.com/health/lewy-body-dementi...

    While there are nursing facility directories for France readily available online, ask your father's doctors for suggestions for the future.

    You have difficult decisions for the future.

    Best wishes

    Source(s): co-administrator http://parkinsonsfocustoday.blogspot.com/
  • joanne
    Lv 7
    9 years ago

    This disease can progress slowly and the stages can overlap-or it can develop quickly. My friends father at the age of 52 went from being a computer engineer to not knowing what he had for breakfast a year later.

    You will have a lot of questions and concerns. Try www.Alzhiemers Society.com

    Each person is different but yes eventually they will need a caregiver, then a caregiver fulltime to having to be placed in a special home as it becomes to much of a danger to stay at home!

    Good luck.

    Source(s): nurse
  • 3 years ago

    1

  • 9 years ago

    I would suggest you get specialist advice with this, as any information on here is going to be hear say.

    But, my grandmother was put into a specialist home.

Still have questions? Get answers by asking now.