www.england.nhs.uk do memory problems matter? "high quality care for all, now and for future...

www.england.nhs.uk

Do memory problems matter?

"High Quality Care for All, Now and for Future Generations"

www.england.nhs.uk

Dementia Diagnosis- Why is it important

Dr Sara Humphrey

GP Westcliffe Medical Practice

GP with a Special Interest in Older People-BTHFT

Clinical Specialty Lead Older People & Stroke Bradford District & City CCGs

GP Advisor Yorkshire & Humber Dementia SCN

16/9/15

www.england.nhs.uk

Content of the Session

• What is Dementia • What is the The National Picture?• What are the National Drivers?• Where are we now in Bradford?• Why is diagnosis important?• How to make a diagnosis in Established Dementia • Patient Centered Care and Care Planning• Advance Care Planning• End of Life Care• Carer Support• Research

"High Quality Care for All, Now and for Future Generations"

www.england.nhs.uk

What is Dementia ?

www.england.nhs.uk

• It is the gradual loss of nerve cells in the brain and as they can not be replaced it is progressive and incurable

• The word Dementia just describes the collection of symptoms and is an umbrella term to cover all brain diseases that affect the brain in this way i.e. Alzheimer's and Vascular Dementia

• Dementia is not a normal, natural part of growing older

What is Dementia ?

www.england.nhs.uk

• For a person to be diagnosed with dementia, they need to have a problem with more than one of the following:

Memory

Communication

The ability to see the world as others do

The ability to carry out practical everyday tasks

The ability to plan a course of action

Problems with the control of some behaviours• These problems need to be sufficiently severe to have

an impact on the person’s life.

What is Dementia ?

www.england.nhs.uk

• The term Mild Cognitive Impairment (MCI) is used when an individual has difficulty remembering things or thinking clearly but the symptoms are not severe enough to warrant the diagnosis of dementia. Only some individuals with MCI will go on to develop dementia.

What is Mild Cognitive Impairment?

www.england.nhs.uk

What is the National Picture?

www.england.nhs.uk

Dementia is under diagnosed

• 850,000 people in the UK have dementia (Alzheimer’s Society, 2014)

• We know that a third of patients remain undiagnosed!

www.england.nhs.uk

We are slowly improving!• 2009 (England)

o 31% of people with dementia registered on GP dementia lists

Nat Dementia Strategy 2009

• 2012 (UK)o 41% of people who are living with dementia have a diagnosiso Increase of 2% since 2011o Considerable nationwide variation Alz Soc 2012

• Jan 2015 (UK)

o HSCIC data shows we are now at 59%o Increase of 18% in 2 years

www.england.nhs.uk

www.england.nhs.uk

What are the National Drivers?

www.england.nhs.uk

National Dementia Strategy 2009

• 5 year plan• 17 interlinked objectives• £150million extra funding

Key themes• Improving awareness• Early and better

diagnosis• Improved quality of care• Delivering the Strategy

www.england.nhs.uk

Prime Minister’s challenge on dementia 2012

www.england.nhs.uk

AwarenessKey role of GPsPost diagnostic support

Information, advice, carersAccess to diagnosisStaff trainingDementia InstituteDementia Friends/ businessesResearch

I million dementia friendsHighest diagnosis rate

www.england.nhs.uk

Where are we now in Bradford?

www.england.nhs.uk

www.england.nhs.uk

www.england.nhs.uk

www.england.nhs.uk

www.england.nhs.uk

Why is a diagnosis important?

www.england.nhs.uk

Patients and their Carers want it!

“It was a huge relief…right thank goodness now we’ve got a diagnosis, now I know what I’m dealing with and I’ll cope with it”

“It’s an illness, it’s a terminal illness as well you know, nobody gets better from it, and it isn’t treated like that with the NHS is it, unfortunately…if it was cancer it would be different, you know”

“Absolutely instead of being really really aggravated you become empathic on diagnosis”

Source: Dementia in Leeds Evaluation Project, 2013

www.england.nhs.uk

Why is it important for the NHS and LA

• We spend £23 Billion a year as a society and we can spend this money more effectively rather than on expensive crisis interventions

• Crisis presentations• Care Home Admission ( or delay them)• Reduce Emergency Admissions and readmissions to

Hospital• Reduce hospital Length of Stay• Spend the money saved on more meaningful support

www.england.nhs.uk

• YES even at a late stage it has Value

1. Allows Advance Care Planning between you ,the patient and families

2. Allows good Patient Centered Care & Care Planning esp around Prevention of Delirium

3. Reduces Unplanned Emergency Admissions

4. Helps plan for good Palliative Care and End of Life

5. Prompts us to consider the MCA and DoLs

6. Helps you to support Carers

Does it matter in Care Homes?

www.england.nhs.uk

How to make a diagnosis in Established Dementia ?

www.england.nhs.uk

www.england.nhs.uk

www.england.nhs.uk

How can we make a difference in Care Homes?

www.england.nhs.uk

• Person-centred care focuses on the individual's personal needs, wants, desires and goals so that they become central to the care process. This can mean putting the person's needs and life style choices, as they define them, above those identified as priorities by health and social care professionals.

• Person-centred care promotes the importance of relationships that are important to the person

What is patient Centered Care?

www.england.nhs.uk

I have personal choice and control over the decisions that affect me.

I know that services are designed around me, my needs and my carer’s needs.

I have support that helps me live my life. I have the knowledge to get what I need. I live in an enabling and supportive environment where I feel valued

and understood. I have a sense of belonging and of being a valued part of family,

community and civic life. I am confident my end of life wishes will be respected. I can expect

a good death. I know that there is research going on which will deliver a better life

for people with dementia, and I know how I can contribute to it. • http://www.dementiaaction.org.uk/

The ‘I’ Statements

www.england.nhs.uk

• An agreement between a patient & Health Care profession on how to manage the patient’s day to day health care

• It can be a written document or something recorded in your patient notes.

• It is about the patients personal needs, wants, desires and goals

• It should cover what we know makes a difference to people’s lives

What is Care Planning?

www.england.nhs.uk

Dementia QOF 2015/16

No Indicator Points Payment stages

DEM 1 The contractor establishes and maintains a register of patients diagnosed with dementia

5

DEM 2 The percentage of patients diagnosed with dementia whose care plan has been reviewed in a face-to-face review in the preceding 12 months

39 35-70%

DEM 3 The percentage of patients with a new diagnosis of dementia recorded in the preceding 1 April to 31 March with a record of FBC, calcium, glucose, renal and liver function, thyroid function tests, serum vitamin B12, and folate levels recorded between 12 months before or 6 months after entering on to the register

6 45-80%

www.england.nhs.uk

• Physical and Emotional Health• Medication• Reducing Falls and Delirium• Risks and Behaviours that challenge• Advance Care Planning-DNA CPR etc• Gold Standard Framework• Carer support

What do you need to consider during care planning?

www.england.nhs.uk

Medication

www.england.nhs.uk

• Haloperidol• Olanzapine• Queltiapine• Risperidone• Clozapine

What are the common antipsychotics?

What’s the problem?

-Sedation-masks Pain and Delirium-increased Strokes-increased Deaths

www.england.nhs.uk

• Donepezil (Aricept)

• Galantamine• Rivastigmine

What are the Anticholinesterase Inhibitors?

What are the side effects?

-Diarrhoea-Headaches-Tiredness

Check BP and Pulse-if low may need to consider stopping

www.england.nhs.uk

• Memantidine

(antagonist

NMDA receptor)

What else may be prescribed?

What are the side effects?

-Headaches-Dizziness-Drowsiness-Constipation-Depression

www.england.nhs.uk

Delirium

www.england.nhs.uk

• Training available through Care Home Liaison Service delivered as three x one hour sessions

• Training Booklet• Get support from your local Care Home Liaison

Service and CMHT

Delirium and Behaviors that challenge?

www.england.nhs.uk

• A discussion in which you may choose to express some views, preferences and wishes about your future care.

•Explore your options

•Identify your wishes and preferences

•Refusing specific treatment, if you wish to

•Ask someone to speak for you

•Appoint someone to make decisions for you using a Lasting Power of Attorney

•Let people know your wishes

Advance Care Planning

www.england.nhs.uk

• Advance care planning is a process of discussion between you and those who provide care for you, for example your nurses, doctors, care home manager or family members.

• Where patients have severe Dementia and may lack the capacity to make decisions on their own and then it is about ‘Best Interest ‘discussions

Advance Care Planning

www.england.nhs.uk

• A guided discussion• Can be undertaken by any qualified person• Discussions about refusal of treatment or DNA CPR

need to be had with a suitably qualified practitioner and you may need to consider the Mental Capacity of the patient in the discussions

• It needs updating if the patient has a significant change of circumstance , new illness or is palliative.

• Patients hold the ACP and the summary goes on System One

• Patient can change their minds!

Advance Care Planning

www.england.nhs.uk

• http://www.palliativecare.bradford.nhs.uk/Documents/Advance%20care%20plan%20booklet%20v.2%20Nov%202014.pdf

• Also on System One

Access to the Y&H Advanced Care Plan document

www.england.nhs.uk

Dementia: A long and unpredictable condition

www.england.nhs.uk

Dementia: A long and unpredictable condition

• People with Alzheimer’s have been known to live for up to 10 years after the initial diagnosis, although this depends on the age when the diagnosis is received.

• People diagnosed with fronto-temporal dementia can expect to live between six and eight years

• While people with dementia with Lewy bodies can live between six and 12 years

• Those diagnosed with vascular dementia can expect to live a shorter length of time after diagnosis – approximately five years

www.england.nhs.uk

www.england.nhs.uk

How do stage the disease?

www.england.nhs.uk

www.england.nhs.uk

How do we know when people are reaching the end of their life?

www.england.nhs.uk

• There are three ways in which people with dementia die (Cox and Cook, 2002).

• People may die from the complications arising from end-stage dementia.

• People may be in the early stages of dementia and die from another illness (eg cancer).

• People may die with a mix of problems. Dementia may not be the main cause of death, but it interacts with other conditions and can complicate and worsen them.

Dying and Dementia

www.england.nhs.uk

• A study of nursing home deaths found that most people with dementia were given a prognosis of more than six months, but 71% of these people died within the six month period

How do we know when people are reaching the end of their life from Dementia ?

www.england.nhs.uk

Triggers to consider that indicate that someone is entering a later stage are: · Unable to walk without assistance and • Urinary and faecal incontinence, and• No consistently meaningful conversation and • Unable to do Activities of Daily Living (ADL)• Barthel score <3

Plus any of the following:• Weight loss • Urinary tract Infection • Severe pressures sores – stage three or four• Recurrent fever• Reduced oral intake • Aspiration pneumonia

GSF Prognostic Indicators

www.england.nhs.uk

• Identify the Carers of your residents and advise then to see their GP practice for a Carers assessment

• Involve them in making discussions about Advance Care Plans and Palliative Care

• Tell them about support to help them cope with the change in relationships ,approaching End of Life Care etc

How do I support Carers?

www.england.nhs.uk

• www.Dementiacarer.net• Carers Resource

• Alzheimer’s Society

• Caring and Sharing –Bradford Relate

What resources are out there?

www.england.nhs.uk

Final thoughts!

www.england.nhs.uk

How can you get involved?

Dementia Friends

www.england.nhs.uk

Dementia Research

Patients in clinical trials, less than 1%, to 4.5%

www.JoinDementiaResearch.nihr.ac.uk

www.england.nhs.uk

• sara.humphrey@bradford.nhs.uk (Clinical Guidance)

Thank You!