Dementia Awareness Week – Hospital Admissions and John’s Campaign

15th to 21st May 2017 is Dementia Awareness week.

The Royal Borough of Greenwich are holding a Dementia Awareness Event tomorrow Wednesday 17th May between 1.30pm and 5pm at:

The Stables, 76 Hornfair Road, Charlton, SE7 7BD.

Come along where you can find out about local dementia services and perhaps take part in the interactive sessions being provided. We are pleased to say we are taking part in this community event.

As well as talking to people about our groups we want to take the opportunity to talk about Hospital Admissions and John’s Campaign. All the NHS Trusts running local hospitals have signed up to be part of it.

So what is John’s campaign? John’s Campaign is :

“for the right of people with dementia to be supported by their family carers”

Queen Elizabeth Hospital

John’s Campaign was founded in November 2014 by Nicci Gerrard and Julia Jones. The Campaign is named after Dr John Gerrard, who died in November 2014 after a catastrophic stay in hospital.

Behind its simple statement of purpose lies the belief that carers should not just be allowed but should be welcomed, and that a collaboration between the patients and all connected with them is crucial to their health and their well-being. John’s Campaign applies to all hospital settings: acute, community, mental health and its principles could extend to all other caring institutions where people are living away from those closest to them.

In the time since the campaign was founded, over 1000 institutions have pledged support and a lot of progress has been made – but there is a lot yet to be done.

For their advice for carers see here. For more information about John’s Campaign see here

 

Hospital  Statistics

The Alzheimer’s Society produced statistics in their 2009 report “Counting the Cost: caring for people with dementia on hospital wards:

  • Over a quarter of hospital beds in the UK are currently occupied by people with dementia
  • The average stay of a person with dementia is three weeks but it can be much longer if rehabilitation is a problem or there is no where suitable to go.
  • One third of people with dementia who go into hospital for an unrelated condition NEVER return to their own homes.
  • 47% of people with dementia who go into hospital are physically less well when they leave than when they went in.
  • 54% of people with dementia who go into hospital are mentally less well when they leave.

 

Tips to manage the patient experience

  1. As per John’s Campaign, speak to the nurse in charge to let them know you are the main carer and to arrange open visiting. This means you will be able to visit outside of normal visiting hours if you want to.
  2. Speak to the doctor in charge of the patient’s care. This can be requested via the nurse in charge. This is essential as the doctor will have the overall say as to what is going to happen. Doctors have a busy schedule but on request they will meet with you or give you a phone call. You can find out about the patient’s treatment plan and can then make it clear if you want to be involved in decisions around the patient’s care, and accompany them should they need to leave the hospital to go on any appointments or be transferred. You can also let them know about any concerns you may have about supporting the patient on their return home.
  3. Before the patient returns home, a discharge meeting will take place. If you want to be included in this process, let the doctor know. This is the opportunity to make sure you have the right support to continue to care for the patient taking into account the recent changes. If you are not happy about something let them know. Your opinion is important and you do have a say.
  4. A hospital social worker will usually be involved if a patient needs a care package to return home or special equipment. Again you can ask to meet with them.
  5. You know the patient best.  Be polite but assertive when speaking on behalf of the patient.
  6. PALS – The Patient Advisory Liaison Service, is there to help. They can be found in every hospital. In the Queen Elizabeth hospital (QEH) they have their office at the back of the foyer. Tel: 020 8836 4592. Do speak to them if you have any concerns that you feel are not being dealt with e.g. on the ward as they can liaise on your behalf. Do not be afraid to contact them as they are there to help.
  7. The QEH, has an Elderly Care Pathway Matron. She is another person you can ask to see to share your concerns. Tel: 020 836 5299.

Important – Do not rely on the ward nurses to pass on any messages. They are extremely busy and they may accidentally forget to pass on your message. Following the tips above may help prevent you from becoming stressed and feeling you are not being heard.

Also –  If you are the main carer, have you given any thought as to what will happen if you become ill or need to go into hospital? Giving some thought to this now may help to give you peace of mind should this happen.

Carers’ Group – 8th May

6 Carers attended the group with the other 2 regular carers providing notice they would be unable to attend this time.

The group started by briefly talking about Teepa Snow’s Gems model and how it can be helpful in recognising where someone is on their dementia journey. See here to read more about this and see Teepa’s video where she explains the Gems.

We talked about the power of music to make a connection with someone and as singing comes from a different bit of the brain to speech, people who struggle with conversation can usually sing well known songs.

The group were asked why it was felt necessary for 4 signatures including the power of attorney, to be required where a care home wanted to give medication covertly. It was explained as the person with dementia was under the care of the home, it was a legal requirement for them to do this even though the medication was essential and hiding it in food was in the best interest of the person with dementia.

A number of issues regarding care records were discussed:

  • Carers with lasting power of attorney for health should be able to view hospital and care home records.
  • Agency carers providing care in the home should ensure entries in their log sheets are factual ie recording the exact time of arrival and departure as these could be required for legal evidence should the need arise. Family members should review the log sheets from time to time so they can raise any queries if need be.
  • Where care is being provided at home by family members, it is not a requirement for a detailed record of the care being provided to be kept. However,  it would be good practice to keep a diary of things out of the ordinary eg. if someone wasn’t very hungry or seemed more confused than normal, as this information could be helpful when discussing concerns with health professionals and it would not always be known at the time if something might be relevant later on.

The challenges of keeping track of what is going on where family do not live locally and care is being provided. A carer said she had used the Jointly app provided by Carers UK which provides an online diary and a quick way of writing a message which all people included in the group can see. Read more about the app here.

We finished by discussing hospital admissions and John’s Campaign. You can read more about this in our blog for Dementia Awareness week.

The next Group meeting is on 12th June.

We look forward to seeing you next time.

 

Janet & Tatiana

We are all precious – The GEMS®: Brain Change Model

Dementia care expert Teepa Snow suggests a fascinating model to explain the stages of dementia. Teepa’s GEMS™ revolves around remaining abilities rather than capacity losses.

Watch Teepa explain the GEMS™ model here.

 

Read her detailed explanation of each precious stone and their attributes here.

The GEMS™ model uses sapphires, diamonds, emeralds, amber, rubies, and pearls to help us better understand people with dementia, their behaviour and how we might choose to respond.

It is a hopeful and helpful perspective on the disease and those who live with it and it provides a framework in which we can support and encourage people with dementia to live enriching lives until the end.

The analogy of a pearl in an oyster shell to describe the last phase of life with dementia is especially beautiful and fitting. Teepee says “If what you think you see is an ugly shell, remember to look deeper: the most important thing is what’s inside.”

Thank you to Seeking the Good Life, a carer’s blog post we follow, from who we learnt about this inspirational model here.

Carers’ Group – 10 April

There were 8 carers at our second meeting including one new lady who commented after, the group was great and what she had been looking for, for some while.

Issues raised and discussed by the group tonight were:

Care homes: If the person with dementia is in a care home, is it reasonable the family is called and expected to still take the person to medical appointments?

In the case of someone who has behaviours we may find challenging, is it person centered for the home to want the person taken off site to do a  blood test rather than ask one of the on site nursing team to do it?

Carers 

Recruiting carers privately – Where does one look? The importance of ensuring anyone employed is checked via the disclosure and barring service.

The importance of regular carers attending to a person with dementia so a rapport can be built. It was recognised this can be a challenge for a care agency though the number of people involved in care should be kept to a minimum.

Recognising that political correctness may not always apply to the person with dementia as the over riding importance is they get the support they need.

Protecting the world of the person with dementia –  Managing the relationship between the family, the person with dementia and social services so the person with dementia is involved and engaged in the decision making process. Social services has a duty to see the person they are supporting. If the family think a conversation with social services or other health professional may cause distress, to communicate their concerns so an agreed approach can be found.

Carers Toolkit – The group discussed 20 things not to say or do to a person with dementia as identified by Kate Swaffer who was diagnosed with young onset dementia. Read the article here.

The next group meeting is on Monday 8th May.

We look forward to seeing you next time.

 

Janet & Tatiana

 

Carers’ Group meeting 10 April

The second meeting of our Carers’ Group is tomorrow night, 7:30pm, at Shrewsbury House.

We look forward to welcoming back those who came last time and meeting new people. Details of the group may be found here.

We will not be able to entertain any people with dementia this time, as Julie and Marie are not available. They should be back next month, so places can be booked for then.

Carers’ Group Launch – A great first night!

It was lovely to be able to provide a place where so many carers felt comfortable to share their personal and emotional stories with the group. Everyone had the opportunity, as agreed in our group contract, to share what they wanted without interruption.

There were 10 carers who came, 6 of whom are at work during the day and could only attend an evening group.

Reflecting on the conversations last night a number of themes emerged for future discussion:

  • Following a recent diagnosis – what information do other carers feel would be helpful?
  • When someone with dementia forgets your name – why is this important to you?
  • Long term caring at home – what are the challenges and tips?
  • Isolation when the carer’s family is far away – where can they find support?
  • Small pieces of information can really help – eg personalised blister packs of tablets, free incontinence pads.
  • Remote caring – how, appropriately used, CCTV can help.
  • Avoiding conflict by using distraction techniques.

We also covered some specific topics:

  • Entering the reality of the person with dementia, rather than trying to force them into ours.
  • The book Case Analogy [see here]
  • Not focusing on the “Black Dot” of dementia: don’t let the diagnosis overshadow your perception of the whole person and their life.
  • Carer coping strategies: Gratitude journals. [see here and here]
  •  The science of focusing on looking for the positive things in the day eg the bus came on time or the sun was shining; to help with well being either by writing it down or thinking about it before you go to sleep.
  • The use of Alzheimer’s Society Talking Point in helping to reduce social isolation and get help and advice [see here]

The discussions reflected the point: “When you’ve seen one person with dementia, you’ve seen one person with dementia”. Everyone is different and reacts differently to their dementia.

It was lovely to see so many stay behind, for the optional half an hour from 9 until 9:30 to have a chat with each other and us.

During a discussion with Janet, Lorraine mentioned Sea Quest a game project by Alzheimer’s Research UK to help defeat dementia. The video on the website is beautifully animated and worth a watch. Lorraine is a remote carer and is using using the idea from the game of creating new memories to buy a small gift for her Mum each time she takes her out to help her connect with the memory. You can see the video here.

Thank you Ann for your feedback “ Thank you. It said on the leaflet I would get a warm welcome and I did.”

By prior arrangement, one person with dementia came along and was entertained by Julie and Maria, Friendship Group team members, while their partner came to the group. They did colouring, played snakes and ladders, and even did a bit of singing. Everyone said they really enjoyed themselves.

We were pleased people said they want to come back.

We look forward to seeing you at out next Carers’ Group meeting on Monday, 10th April.

If you have any comments you would like to make about tonight’s group meeting, we would love to hear them

 

Janet, Tatiana and Peter

Note: We are aware some people who attended do not use the internet so we will have copies of this blog at the next group meeting.

For a wealth of information on dementia check out the Alzheimer’s Society Publications and Factsheets [see here]

Carers Group –  Good news update

We know it can be difficult for carers to leave the person with dementia so we are pleased to announce, by prior arrangement, we are able to support a person with dementia alongside the carers’ group.

This is all thanks to Julie and Marie, two of our lovely team members who have offered their services. You can meet them here.  Julie and Marie will interact with people in the same way they do at the Friendship group and similar activities will be provided such as playing games – dominoes is very popular –  doing word searches and adult coloring.

Spaces at present are limited to 4 people and must be booked in advance. It is also a requirement the person with dementia is comfortable being in a separate room to their carer.

Please telephone the Reflections team on 07981 741 499 if you are interested. Places can be booked up to and including the morning the group takes place.

Dementia Friends session

I plan to run another Dementia Friends session on 18th April. The session will help you learn more about what it is like to live with dementia and turn that understanding into action. If you are interested in coming along please e-mail me on reflectionsgreenwich@gmail.com.

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[Dementia Friends Champion]

You can find more information about Dementia Friends here.