Home and residential care
It is important that care home staff are aware of the specific needs of someone living with LBD. However, it can be difficult to find a care home or care staff who are familiar with LBD.
To address this, Rare Dementia Support are developing and collecting resources designed to improve understanding of LBD and other dementias among the public and professionals. These can be found on our Learning page.
Care home staff may also find our short film useful, which features clinical explanations and insights into LBD. Watch the film here.
Some people may also find the Care Quality Commission care home finder tool useful. Here you can search for care homes in England based on your geographical area and see independent reviews of the quality of care. You can filter by age and condition so you are are more likely to find somewhere suitable to your needs.
For those living in other parts of the UK, the following sites can provide similar services:
Wales: Care Inspectorate Wales
Scotland: Care Inspectorate
Northern Ireland: Regulation and Quality Improvement Authority
Towards end of life care
When a person with dementia is approaching the advanced stages of their condition, it can be a very difficult time for them and their loved ones. Although it’s hard, talking with friends and loved ones and planning ahead can help ensure that a person’s needs, and the needs of those around them, are met at the end of their life. Ideally, this should be done as early as possible in the illness when someone is best able to decide for themselves what they would want. For more information about this topic, including advanced care planning, palliative care and support for carers you may find the Alzheimer’s Society website useful.
The duration of LBD and the rate at which symptoms progress varies from person to person. Although LBD is itself a life-shortening condition, people with LBD are often affected by another illness, such as pneumonia. This is because LBD affects how the body copes with infection and with other physical problems. Pneumonia is the cause of death in up to two thirds of people with a dementia.
We are currently working to expand and develop our guidance on the late stages of LBD to make it more informative. If you would be interested in contributing your experience and expertise to this work please get in touch. The experiences of support group members and families are very valuable to researchers in helping to advise people in the future.
Support with later stage symptoms
Some of the symptoms that people living with LBD might develop are outlined below. These symptoms will not apply to everybody. If you would like to talk to somebody about how the issues raised here have affected you, please get in touch.
In later stages, people living with LBD will experience most of the symptoms described previously but to a greater extent. Problems with memory and attention can become more pronounced and people may need help with many or most daily tasks, including personal care and hygiene.
Hallucinations and delusions can become distressing for the person with LBD and their family, particularly when trying to suggest to a person with LBD that what they are seeing or believing is not true. People living with LBD can sometimes behave in a challenging manner (agitation, aggression) which can be difficult to manage.
Motor symptoms can also become worse with time and many people with LBD are prone to falling in late stages.
It is important to remember that there are strategies and sometimes treatments that can help manage these symptoms. Physiotherapy and occupational therapy can be very helpful in managing problems with movement. Speech and language therapy could also be used if problems with swallowing and speech develop towards the advanced stages of the condition.
We have provided some information on strategies and support that others have found helpful in managing the symptoms of LBD. These can be found on our Living with LBD page. You may also find visiting our FAQs section useful.
People affected by LBD, including partners, carers and families, may find coming along to our LBD Support Group meetings helpful. There you can speak to others who are in similar situations, as well as address your questions and concerns with a wide range of professionals in a space of mutual respect and understanding. We also run separate groups for carers and bereaved carers. Find out more about upcoming meetings on our Meetings page.
If you would like to talk to somebody about how the issues raised here have affected you, please get in touch.
