A diagnosis of Lewy Body Dementia (Lewy Body Dementia) does not necessarily mean you cannot make or be involved in decisions about your life. Your autonomy, individuality and rights are very important and should be protected and respected. You are entitled to both your privacy and confidentiality. Not everyone likes to discuss their business whether that be personal or medical.

However your level of independence will decrease as time goes on. In order to remain as safe and well as possible, you may need to consider some adjustments over time. Involving people in changes you experience and sharing problems with others will ultimately help you face new challenges that this condition will present.  No single way or approach is best when it comes to living with Lewy Body Dementia but we recommend being open to learning a new way of dealing with the challenges. 

It is important to be optimistic yet practical. It is okay to ask for help. Below we mention some general tips that may be useful for both the person with Lewy Body Dementia and their family. Also there are some links for organisations and websites that have further information.

Citizens Information/ Social workers. One of the first and was prominent concerns people have when diagnosed with a life changing condition is financial. We recommend either seeing a social worker or contacting Citizens information 

Citizen Information

You may wish to make financial arrangements for the future or have a legal arrangement regarding your affairs.

Knowing entitlements such as medical card applications, fuel allowance, carers allowance etc. 

Think Ahead document. It is recommended that we ALL have a discussion at some point in our lives about how we wished to be cared for. This document provides a structure with which to do that. The Hospice Association of Ireland would offer advice on how to proceed and use the document.

Irish Hospice Foundation

Preventing falls is very important as people age. People with Lewy Body Dementia are at a greater risk of falling. Practical tips that can reduce the risk of falls include

• Ensure your house is well lit and clutter free.
• Avoid use of loose rugs and mats.
• Attend your GP regularly for check-ups, assessment of osteoporosis (brittle bones) risk and a review of your medication.
• Ensure involvement of relevant health care professionals to prevent falls e.g physio to maintain strength, balance and flexibility. OT to ensure aids and equipment are in place at home to optimise safety and independence, dietician to maintain a diet for bone health.

Consider wearing a pendant alarm which you can use in emergencies like after a fall. This will contact a nominated person to come to your aid.

See HSE falls prevention leaflet for more information

We recommend that you have an emergency contact set up on a phone or perhaps on a pendant alarm. It is a good idea to have all of your medical and relevant personal information in an easily accessible place if you have to attend hospital in a hurry. Some people use The Lions club message in a bottle.

Medication management. If you have difficulty remembering what medication to take and when then you may need to take steps to address this very important part of your health. 

Some people find a blister pack to be useful. This is when your local pharmacy arranges all of your medication for the week into a sealed easy to use container with each day’s medication placed in slots for you. 

Sometimes a reminder on a phone or a specialised clock can be helpful. Alz.ie website has examples of these potentially useful memory aids

It is recommended that you and/or your next of kin are up to date with your current medication list. It is a good idea to have this record on you for all doctor/ hospital appointments. 

Keep up to date with your appointments for your doctor and other members of the team. Use a calendar to track appointments. Contact the department if you think your appointment is overdue or if you have any new concerns.

It may be useful to keep this symptom checklist to show to your doctor or nurse

Although it doesn’t replace the assessment of your treating doctor it can help and guide your progress. It can also be very informative for health care staff who are less aware of the many symptoms that can occur with Lewy Body Dementia.

Symptoms Checklist