Dementia is an umbrella term for various diseases which impact the brain. Alzheimer’s is a common type, caused by the build-up of protein. Pick’s disease is another – recently shown on the programme The Trouble With Dad with David Baddiel.
Dementia does not just occur in old people and not all old people suffer from Dementia.
It is also not just about losing your memory, you can lose communication skills, logical reasoning, sequencing skills and perception can all be affected.
Cara gave us a good explanation of how dementia can affect a person See http://dementiapartnerships.com/resource/dementia-friends-bookcase-analogy/ for details
Adaptions can be made once problems diagnosed e.g. an elderly person who has lost recent memories may only remember boiling a kettle by putting it on the cooker, in which case you would get them that type of kettle rather than an electric one.
Rachel shared some statistics:
- 25% of patients in General Hospitals have Dementia (though they may be in there for a variety of reasons)
- They often have a poorer experience of care and are distressed, disoriented and unable to communicate their problems.
- This can have serious consequences such as malnutrition, dehydration, infection, delirium, higher mortality rates, more like to end up in institutional care.
- For 50% of those patients the Dementia is not diagnosed.
- These patients are 3 times more likely to die during their stay then non-Dementia sufferers.
- A third of them did live at home but then did not return home and ended up in some kind of care.
- Their hospital stays last twice as long.
- Personal knowledge about a patient which is gained when Friends and Family are involved in the support and care can improve the patient’s experience of and outcomes from care. E.g. knowing that a patient always eats toast for breakfast and need their routine so refuses a breakfast of cereal in hospital.
- The WI Campaign https://www.thewi.org.uk/campaigns/current-campaigns-and-initiatives/carers-welcome
- John’s Campaign http://johnscampaign.org.uk/#/
- NHS Incentives for Hospitals to take some measures to improve this e.g. rooms for carers to stay, more flexible visiting hours.
In 2016 there were only 9 published studies and these did not involve all 3 parties (patient, medical professionals, family) and focussed on interviews and physical care. Rachel spent 9 months per ward she studied across different NHS trusts.
She carried out interviews but also hours of observations where she sat and watched what was happening, she also had permission to attend meetings with the medical staff and was able to build a story of an individual’s hospital stay. She discovered that there was were lots of causes of disconnects in the care of Dementia patients.
- The hospital environment is very clinical
- Very busy
- Patients felt unsafe
- They questioned why they were there
- There are unfamiliar routines
- They are surrounded by strangers
- They are not in their own clothes
- The food is different
- They had no personal belongings
- Staff were too busy
- The wards were staffed for patient’s physical needs
- Conflicting priorities – short visiting hours to minimise risk of infection
- Some visitors would never meet the medical team covering most of their relatives care e.g. they visit in the evening when that shift has gone home
- Patients not always involved in decisions
- But where there was a Connect this resulted in a better experience
- Family being around
- Staff have specialist training e.g. making a connection with a patient whilst carrying out a routine task e.g. during time taken to bathe a patient
- Make the ward a more homely environment
- Knowledge from the family e.g. that one gentleman always said Yes and No the wrong way around
- Staff finding out a fact about that person which would trigger a conversation e.g. I hear you used to work in the mill
The current research programme is gathering more evidence about the positive impact of involving family & friends. They are developing a set of guidelines for involving family & friends.
They are developing and testing ways of involving family & friends to meet their needs as well as those of patients and medical staff.
Also people without families need to be considered – what can be done to improve their outcomes?
What can you do?
- Make more Twiddlemuffs http://www.leedshospitalsfundraising.org.uk/downloads/TwiddleMuffs.pdf
- Support & Promote the WI Campaign
- Encourage hospitals to do more
- Become a Dementia Friend or even a Dementia Friend’s Champion (https://www.dementiafriends.org.uk/) – this is a social movement about becoming more Dementia friendly with organisations like the Police and Supermarkets getting training.
Where to find out more · https://www.alzheimers.org.uk/ · http://www.leedsbeckett.ac.uk/pages/dementia-research/
We thanked Rachel and Cara for a very interesting talk.
Thanks to everyone who made and/or decorated a Twiddlemuff – they were amazing. Clare and Rachel will be taking these to the Dementia ward at St James Hospital.
