My blood ran cold when I got the call for social services, “Your great aunty was found wandering last night, but she is safe and back in her flat. The police and London ambulance service (LAS) were called and after assessing her they felt she was safe to take back to her flat and put her in bed to sleep”
My mind was all over the place between panic and relief but also a little pride when I realised that Tooting Nani had managed to get out of her bed, start using her rollator and went out of her flat and to the end of her street and up the road before she was noticed by diners outside a busy restaurant on Upper Tooting Road. Using Google Maps, I calculated this frail lady had managed 600 metres on her own at night, surely deserving of a medal!
This type of behaviour is called wandering and is a recognised feature of some patients with dementia and requires multiple actions. This can also be part of a phenomenon called sundowning, which is a behaviour change that occurs in the late afternoon up to sunset and can include anything from being agitated and aggressive to pacing and wandering. From a medical perspective, I usually examine and screen these patients in the first instance with tests to ensure there are no obvious causes which can be corrected, but I have always tried to navigate this area of being a doctor but not knowing a relative’s medical history by signposting back to their GP (more on that challenge later!) The LAS and police had decided there was no medical problem that needed her to be taken to the hospital and had contacted social services, her warden and her GP about the events of the previous night. My immediate thought was this would not have happened if she had been living with us but there was no point in crying over spilt milk. I was grateful to all those who helped her in her hour of need, from the diners in the restaurant to the emergency services who are increasingly having to become the safety net for social problems. (see Right care, right person-who cares)
Unfortunately, these social issues are not easily resolved, as we discovered when I spoke with social services after this incident. Tooting Nani was living in a warden-controlled flat, which is appropriate for those who are generally independent and do not have nursing or other significant care needs, but they can call on the warden for any emergencies or help when needed. Her warden lived nearby and had been contacted by LAS and the police, and she was not happy with us as a family because she felt we needed to be more responsible for her care.
Her anger was due to her belief that Tooting Nani was not appropriate for this type of housing because she was vulnerable, but by having an extended family and friend network who visited her regularly meant these vulnerabilities were being masked, and ironically, if we decided not to help at all then all her care needs and appropriate housing could be addressed properly. Damned if you do, damned if you don’t!
This was not the time for arguments as this would not address Tooting Nani’s needs, and quite clearly, this could happen again, and we would need to have a blunt conversation with social services about her safety and preventing another episode like this from occurring. She might not be so lucky next time if she went out of her flat.
They agreed that our involvement was papering over the cracks of her care and we should now be looking at a safer accommodation for her as warden controlled housing was not appropriate and she would need either the next level up of supervision called special sheltered housing, residential or nursing (see Whitgift almshouse- Who cares).
As anyone who has tried to buy or move house knows, this is not an easy or quick process and often relies on luck more than design, but at least the ball was rolling, and we could tell the warden that things were in place for her move. In the meantime, social services had installed a bed alarm for her, which meant if she got out of bed and did not return within a certain period, this would trigger the alarm with the suppliers, who would ring me or my wife to inform us to ensure she was safe…more on that later!
Her GP had run various tests to ensure there was no treatable cause of her wandering, but it was when we spoke to Tooting Nani and her favourite carer, S**kri, that the penny dropped as to why she might have wandered out of her flat.
Unfamiliarity is the enemy of dementia, and when Tooting Nani’s care was increased, she was openly aggressive and hostile to all the carers who came as part of her package because she felt they were intruders and, on some occasions, thought they were thieves! (see In senilo veritas-who cares) But one of the carers, called S**kri, was a very patient lady who, through perseverance and love, won her heart over, and they developed a deep bond to the extent Tooting Nani would ask when she was coming and unlocked the most vital part of any caring relationship, continuity and familiarity.
As our population gets older, the need for carers will continue to increase, but we need quality as well as quantity. These carers will have multiple clients they will be looking after as well as their own families, which makes it a difficult balancing act to be available to ensure continuity.
In this instance, this is exactly what happened because S**kri had a number of family commitments she had to deal with, plus her agency was giving her different clients and was not available to see Tooting Nani for a few days. This caused her great distress to the extent she was telling the other carers not to come and started throwing things around her flat. This was behaviour we had never seen before, and during this time of agitation and her longing for S**kri, she then wandered off out of her flat…but was this actually aimless, or was it a culmination of her missing S**kri and searching for her? Tooting Nani was not able to tell us, but when I spoke to her care agency to try and ensure S**kri was the preferred carer to allow for continuity of care then, the wandering never happened again. I don’t believe this was a coincidence and emphasised the value of continuity of care and its benefits, irrespective of age and cognitive ability, but sadly, we live at a time when patience and nurturing of these vital relationships are being sacrificed at the altar of speed and access and if we do not protect and pass on this understanding the ultimate losers will be ourselves when we are the recipients of care.
