Vulnerable Alzheimer's patient left at wrong house

“Put yourself in my mammy’s shoes. Can you imagine the sheer terror a person with dementia would experience being left in a strange house, with people they did not know, with no explanation of why or for how long?"

These were the words of the daughter of a woman with a diagnosis of Alzheimer’s disease who described as “completely terrifying” the instant she realised her extremely vulnerable mother was missing.

When her mother did not return home from MellowDEEDS in the Old Library Trust, Healthy Living Centre in Creggan at the usual time, her daughter rang the group to check if everything was okay.

MellowDEEDS is an integrated choir comprising people living with dementia and DEEDS (Dementia Engaged and Empowered in Derry and Strabane) staff and volunteers.

Speaking to Derry Now, the daughter, who wished to remain anonymous to preserve her mother’s confidentiality, said she was told her mother had left the centre an hour and a half previously in a taxi arranged by the Old Library Trust.

At that instant, my heart froze,” she said. “I felt sick with fear. I did not know where my elderly mother was and the group into whose care I had entrusted her did not know either.

“What seemed like an eternity later, the group co-ordinator phoned back and told me Mammy had been left at another house in our estate by mistake. She asked me if I knew the people at the address. I said, ‘No’. She then asked me if I would go to the house and get Mammy.

“I was in a state of complete shock as I walked around the estate trying to find the house at which Mammy had been left. I was praying she would be alright, would not come to any harm, would not be frightened or distressed or panicking.

“Put yourself in my mammy’s shoes. Can you imagine the sheer terror a person with dementia would experience being left in a strange house, with people they did not know, with no explanation of why or for how long? The most debilitating symptom of mammy’s diagnosis is that she can no longer express herself properly or communicate her needs. I was furious and heartbroken in equal measure when I arrived and saw the distressed state she was in. She was completely traumatised and it does not bear thinking about what could have happened."

The woman’s daughter said she still does not know how her mother physically got out of the taxi or got from the taxi to the front door of the wrong house.

She added: “I have asked Old Library Trust for an explanation, but to date a satisfactory explanation has not been forthcoming. 

“My mammy has very limited mobility. She has acute knee pain and cannot walk unaided or for any distance. The driveway up to the house at which she was left was extremely steep.

“Had the same thing happened to a child, I wonder would the attitude have been so dismissive?”

She said: “It seems as if Mammy has lost her rights since her dementia diagnosis, and the very organisation which purports to have been set up to protect her rights has trampled all over them.

“I think it would be remiss of me to let this pass. I am advocating for Mammy. I think she has a right to be heard. What happened to her that day was horrendous. It has been swept under the carpet. They are effectively trying to silence us.

“Since it happened, we have noticed a marked deterioration in Mammy’s condition. She had been doing really well up to that point. The most significant change is that now, when she comes home from her fantastic day centre (which is regulated by the RQIA),she is clearly terrified about getting off the bus.

“She screams and she cries and we have not been able to get her off the bus. The only thing I can attribute that to is that, whatever happened to her that day, in her mind there is a fear now of where she is going.”

Poignantly, the woman’s daughter said the day of the incident was the first time her mother did not know who she was.

She said: “When I got to her, I didn’t think she knew who I was, and I think that has drifted, really sadly, in the last few months. It feels like she is starting to lose the thread of who I am, and I feel I have let her down by entrusting her to somebody who didn’t take proper care of her.

“No-one contacted me within the first week to see how Mammy was. Once they told me my mother had been left in the wrong house, there was no further contact.

“At the very least I would have expected the MellowDEEDS co-ordinator to come out and ask how Mammy was and to maybe ask, ‘What could we have done differently? How could we have done better?’

“When I said she was not going back to the group, I laid out all the reasons why I couldn’t possibly entrust Mammy to their care again. I contacted the project director. I contacted the chair of the Old Library Trust and for weeks I was met with, ‘Very sorry. We’ll look into the matter but people are on holiday so it is not a good time.’ I felt like mammy was an inconvenience and I was a nuisance. I saw no evidence that the health and safety of all of the members of MellowDEEDS was paramount,” she said.

Despite repeated requests, the woman’s daughter has not been furnished with the safeguarding protocols or information on the training and qualifications of the staff in attendance at these groups for people with dementia from the Old Library Trust.

She added: “There was a cursory investigation into the incident, carried out by the group itself. 

Its chairperson investigated his own group and decided it did not need to uphold all of our complaints. 

This was a missed opportunity to appoint an independent panel. Tellingly, there was no mention of safeguarding on the letter I received. 

To attribute this incident to ‘human error’ is lazy and irresponsible. It is precisely because of inherent risks in situations like this that mitigating factors are put in place. 

Had the Old Library Trust been governed or regulated by any authority but its own, it would have been required to comply with established standards of care. 

“I am also disappointed that the Trust has said there was no issue to investigate. I am at a complete loss to understand how it arrived at this decision when no-one examined Mammy, no-one spoke to me or Mammy. How do they know then there is no case to answer?

“I am going to speak up on Mammy’s behalf because of the damage that was done to her. I want to say to the people doing amazing jobs as carers, ‘You have rights for your loved ones who have dementia and for yourselves as carers to say, this is not good enough.”

The daughter said she could not live with herself if she kept quiet about what happened to her mother and then something even worse happened to another person with dementia in the future. “I want people with dementia and their carers to know that they do have a voice, that they are entitled to be treated with dignity and respect, and to avoid a repeat of the damage suffered by my mother as a result of this incident.

In response to a Derry News request for a comment on the incident, a spokesperson for Old Library Trust, Healthy Living Centre said: “The Old Library Trust has taken the complaint very seriously and carried out a full and thorough investigation as per organisation complaints policy.

“The concern highlighted in this complaint identified a genuine human error in service delivery and was immediately corrected. A full response has been shared with the family. We have given an apology and offered our ongoing support.”

A spokesperson for the Western Health and Social Care Trust (Western Trust) said: “Due to patient/client confidentiality we do not comment on individual cases. The primary concern of the Western Trust is the safety and welfare of all of its patients and clients. Incidents where it is believed that adults have come to harm and may require protection will be referred to the Trust’s Adult Protection Gateway Service.”