A safeguarding meeting was held to review the first major incident after Grandma’s move into the care home.

I attended the hospital after getting a call to say Grandma was in an ambulance on her way there. An initial confused call led me to think she had some kind of water retention in her leg on arriving at the hospital and getting the scan results she had broken her hip! When I asked her what had happened she told me she had been hit by a beer keg! She later said the same thing to the surgeon when he came to see her and I had to tell him she had Lewy Bodies Dementia. As the care home had said she had not had a fall from talking to the doctors we all assumed that the fracture may have initially been an impact fracture from a previous fall and due to her being up and about and more mobile with the help of the care home this had actually potentially caused this to have turned into a full fracture. 

The police confirmed that the three allegations made by Grandma against care staff were to be closed due to insufficient evidence.

• On balance, the professionals agreed the allegations were most likely a result of her Lewy Body Dementia, which causes confusion, hallucinations, and false memories particularly in unfamiliar environments or when new medication is introduced.

• Historically, Grandma had made similar claims against community carers in the past that were disproved by camera footage, showing a pattern linked to her condition.

• It was agreed that Grandma lacked capacity to understand the nature or consequence of her allegations.

• A new risk management plan was introduced:

  • Two carers (or health professionals) to attend all personal care interactions within the care home.

  • All incidents to be fully documented and reported via safeguarding processes.

  • A robust personal care plan to address her discomfort with physical touch.

  • Consideration of therapeutic techniques and continued rapport-building to reduce distress.

• Although the use of a camera (as had been in place at home) was discussed, it was deemed not viable due to privacy restrictions in shared and personal care areas.

• Despite the incident, the care home had made clear progress in her wellbeing Grandma was clean, showered, dressed, and eating better, and her self-neglect had notably reduced.

This admission occurred during her time in a care home and was her second visit to hospital since moving there. The care home reported that there had been no fall. By this point, she was being hoisted for transfers following a previous hip fracture.

Although her Lewy Body Dementia affected her awareness and understanding, her reduced mobility was not solely due to physical inability. She strongly resisted walking and did not like being touched, which made physiotherapy extremely difficult. Attempts to encourage movement often caused her distress, and over time hoisting became the primary method of moving her.

Hospital staff later suggested that her shoulder injury may have occurred during handling or repositioning. This was deeply concerning and highlighted how vulnerable she had become, and how easily injury could occur when trust, communication and physical care are not carefully managed for someone living with Lewy Body Dementia.

The hospital environment proved overwhelming for her. Changes in routine, unfamiliar faces, noise and lighting increased her confusion and hallucinations. She struggled to understand why she was there and what was happening to her, which led to fear and agitation rather than reassurance.

Early communication with hospital staff added further anxiety for our family, as we were initially given incorrect information about her condition. This made it difficult to fully understand what was happening and delayed our confidence in questioning decisions and advocating for her care as strongly as we should have.

Although the physical injury was treated, the emotional and cognitive impact of this hospital stay was significant. It became clear how quickly someone with Lewy Body Dementia can deteriorate in an environment not designed for their needs. This experience reinforced how vital it is for medical staff to have dementia-specific awareness, and for families to speak up when something does not feel right.

This hospital stay marked a turning point in showing us just how vulnerable people with Lewy Body Dementia can be within clinical settings, and how easily their condition can worsen when they feel frightened, misunderstood or unheard.

Her third hospital admission began when family arrived to visit her at the care home and found she was waiting for an ambulance. Staff were concerned that she may have suffered a stroke due to a sudden change in her condition.

At hospital, we were told that she had two haematomas - one older (chronic) and one recent. By this point, her overall health had declined significantly, and both her physical strength and cognitive abilities were greatly reduced.

Due to her age and frailty, surgery was not considered a suitable option. The risks were felt to outweigh any potential benefit, and treatment focused on keeping her comfortable and monitoring her condition.

While in hospital, she developed a deep vein thrombosis (DVT), which later travelled to her lungs. Unfortunately, this could not be treated in the usual way because of the risk posed by the existing haematomas. This left very limited options for intervention.

Once again, the hospital environment proved overwhelming for her. Communication became increasingly difficult, and she struggled to understand what was happening around her. Even simple procedures caused distress, and her confusion and hallucinations became more pronounced.

Over the course of this admission, her condition deteriorated rapidly. Despite medical care, her body was no longer able to recover in the way it once had. This hospital stay ultimately led to her passing.

For our family, this period was marked by uncertainty, emotional exhaustion and a deep sense of helplessness. It reinforced how complex and fragile Lewy Body Dementia can be, and how difficult end-of-life care can be for both patients and those who love them.

We share this part of her story not only in her memory, but to help other families understand what can happen, to prepare them emotionally, and to encourage greater awareness and compassion in hospital settings for people living with Lewy Body Dementia.