Dementia care


member enters care, it is the first time they have been inside a care home. This in itself can be a daunting experience with new people to get to know, endless corridors to navigate and the reality of seeing people who are living with far more advanced dementia than their own relative. In my aunt’s case, my role as main carer was identified immediately and I was involved in completing her care plan. This proved to be an effective way of sharing information on her background and her likes and dislikes, but did not allow me to share information on who my aunt was, what gave her comfort, her identity or the role she could still have within the care setting. I wasn’t invited to discuss the role I would have or wanted to have in her ongoing support or how I felt emotionally about ‘handing her over’. In fact, I experienced just as much anxiety after my aunt entered care as I did when she lived at home alone. This demonstrates that although the placement may be necessary for an individual living with dementia, it won’t automatically ‘fix’ the primary caregiver and make everything okay.


The grief, loss and guilt I felt on the day my aunt moved into the care home was unexpected but very real. My protective instinct went into overdrive and for the first few weeks my main focus was on seeing her as often as possible, not just for my benefit but also so that she saw a familiar face during what must have been a scary time for her. If staff had advised me to stay away at that time so my aunt could ‘settle’, I would have felt bereft. After a few weeks, the frequency of my visits settled as I started to feel a sense of familiarity with staff and a trust in the care home. On my twice-weekly visits, various members of staff would greet me, sometimes with positive news about something my aunt had done, but more often with an apology about her wearing odd shoes, the stain on her blouse or her uncoordinated clothing. During one particular visit, a member of staff fearfully explained that my aunt had refused to wear an apron while eating and she was just about to change her blouse. I explained that I was delighted to see the stain on my aunt’s top as it demonstrated to me that she was being supported to eat independently and make her own choices. I could picture my aunt’s reaction to being given an apron to wear! The relief on the staff member’s face was overwhelming and from that point on my relationship with the care home changed. I was finally seen as a care partner and not as a threat.


Are we being honest and transparent about what families can truly expect from care...?


Struggling to engage


During many of my visits, I would see family members struggling to engage with the person they were visiting. Often, they would correct the resident’s reality - in some cases, telling them off. I witnessed uncomfortable situations, which often resulted in the family member making a hasty departure and the care staff left picking up the pieces. The same scenarios are seen while carrying out observations, with the emotional wellbeing of people living with dementia being negatively affected for several hours.


Visiting families and friends are often at the end of a long journey themselves and are experiencing a range of emotions, from guilt to relief. For some, just getting to the care setting can be an enormous struggle as well as a financial burden. The connections they are trying to maintain with the person they have supported are often based on how they were in the past rather than the reality of how they are today. They witness new relationships being formed within the care setting as their own role begins to diminish and they feel redundant. This can lead to resentment, which can spill out as anger or complete withdrawal. Staff within a care setting can make judgements about families based on what they see without any knowledge of what has previously occurred. The assumption that the person living with dementia is a ‘loved one’ can lead to an expectations from staff about how the family member should behave.


Conclusion


Thanks to my understanding of dementia, I was able to engage with my aunt until the day she died, which is something that many family carers do not have the benefit of experiencing. For example, I was able to accept the fact that I was often seen as ‘mum’ by her and took a great deal of comfort from the fact that I represented emotional security. I began the dementia care journey with my aunt as someone who has worked in the field for 23 years and I struggled. This helped me to appreciate how different this journey would be for a family member


April 2020 • www.thecarehomeenvironment.com


with little or no knowledge of dementia. My experience has led me to ask many questions. Are we being honest and transparent about what families can truly expect from care or are we making promises that put staff under additional pressure? Do we support families to connect with the individual’s current reality through information, education and support from staff who are trained in carer engagement? Do we enable staff to understand and empathise with the journey that family carers and friends experience?


Finally, what are we missing? Time and time again, when I am facilitating training or carrying out observations, I see staff who want to give more and are dedicated to giving the best possible support. By involving families who wish to be care partners from the start, we can learn about the people we support and ultimately create the best possible experience for the individuals who are living with dementia, their families and staff. By implementing the standards from The Triangle of Care, providing better education for both care home staff and family carers and encouraging an honest dialogue regarding the reality of care, steps can be taken to bridge the gap between the residential care setting and family carers.


Resource


To find out more about Alzheimer’s Society go to www.alzheimers.org.uk


TCHE


Sue Brewin


Sue Brewin is an associate dementia trainer for the Alzheimer’s Society. Since becoming a trainer, Sue has been instrumental in course development and delivery.


9


Page 1  |  Page 2  |  Page 3  |  Page 4  |  Page 5  |  Page 6  |  Page 7  |  Page 8  |  Page 9  |  Page 10  |  Page 11  |  Page 12  |  Page 13  |  Page 14  |  Page 15  |  Page 16