Dementia Awareness Week @The Memory Café – a personal view
This week is dementia awareness week. As a constant visitor to Gate 28b- level 5, at Southmead Hospital, it's difficult not to be aware of this.
Outside the gate a large banner announces that '1in 3 elderly people will end their life with dementia'. It has a picture of a couple smiling happily below this message, as if to make you feel more comfortable! Here a 'Memory Café is held every Wednesday between 2-pm to provide information advice and support on all aspects of dementia care.
At any age any signs of diminishing memory bring anxiety. 'It's dementia' we may joke when we forget things. A quiet moment outside the Memory Café supplied the clinic view. Put simply, the problem is the inability to form new memories.
The ward itself treats a large percentage of elderly people, including patients with dementia. My new friend in gate 28b told me when asked (correctly) that she was 96, her father's name in full and details of her family. She could however not retain for more than 5 minutes where she was. 'Where am I?'- You are in hospital' -'Am I really?' The same conversation repeated over and over. She could though sit in a chair and put her legs up on the table - seriously impressive at 96. My other new friend gave me impromptu Spanish lessons, and told me bawdy stories from her past. Save to her it was very much the present.
The role of carers is something the hospital has taken very seriously and this is evident as soon as you walk in. It is to their credit that the NBT were the first to sign up to 'Johns Campaign'. This was for the right of people with dementia to be supported by their carers in hospital. This was founded after the death of Dr John Gerrard at the end of 2014. He had been diagnosed in his 70s with Alzheimer's and had been managing a good quality of life until, he was admitted to hospital at the age of 86 with leg ulcers. After a 5 week stay with limited access to his family he suffered a catastrophic decline. Entering hospital articulate and able and emerging as 'a broken man'.
Anyone who has been in the hospital system will be aware how vital a role family or other supporters are. Particularly for those with diminished capacity whether from dementia, or in our experience with a brain injury following a stroke. With John's Campaign, a 'carer' is given official recognition, with an access pass to be able to come and go freely, a car permit and access to the staff restaurant. In return they assist with care such as washing changing and feeding.
Knowing your patient can be taken seriously with the use of the 'This is Me' information form. This can be placed on the door outside the patient's room and gives personal information. With an Alzheimer's patient, to know in caring for them what they like and don't like and what their 'triggers' are makes a huge difference. As does having a carer to provide help and reassurance. Sadly not all family's take the time to provide these
In gate (or ward) 28b which is for complex care their experience and approach in dealing with dementia makes all the difference. The care, attention and never ending kindness of the staff is quite humbling. One of my many memories is from only last weekend of a young trainee wheeling a patient up and down the corridor at some speed at intervals throughout the day. The frail occupant was in a 'terrible hurry'. Did she want a nice rest and a foot rub? Absolutely not, she had no time for that !
Nowhere however is ever perfect and there is still much work to be done to increase awareness. In another ward a friend's parent with dementia nearly had his post discharge care package reversed when she found he had been asked if he had dementia, and did he need help when he was discharged? To both he replied 'no' with great indignation. Luckily for him, she was there to support him.
As many of us have experienced, changes in health and situation are often rapid and unexpected. The simple lesson is to never expect you will have more time. One thing you can do is to make sure that Property and Health Lasting Powers of Attorney are put in place well in advance and registered. There are 2 different powers of attorney. The process of registering is slow, so this needs to be allowed for. Once the forms are back, getting certified copies and registering the property version with institutions is also a slow and painful process. All this you don't need when already dealing with difficult issues often having been catapulted in with little warning. Making the Powers of Attorney is now something which can easily be done online without legal support. The registration fee is £110 each. A small price to pay for peace of mind and to provide legal authority for you to help your loved one. Legal support is otherwise readily available. My own firm can of course assist, and in addition have a number of experts to advise on related aspects such as Public Guardianship and care home fees. Certainly if the family situation is in any way involved, you should take advice on adding additional wishes to the forms. Careful consideration in advance, as many of us know with the benefit of hindsight, can save a great deal of unnecessary stress and expense later.