Compassionate care for people with dementia

End of Life care for people with dementia

Maggie Stobbart-RowlandsNational GSF Centre

www.goldstandardsframework.org.uk info@gsfcentre.co.uk

The National GSF Centre in End of Life Care

The leading EOLC training centre enabling generalist frontline staff to deliver a ‘gold standard’ of care

for all people nearing the end of life

“Every organisation involved in providing end of life care will be expected to adopt a coordination

process , such as the GSF” DH End of Life Care Strategy July 08

The right care, for the right people, in the right place, at the right time…

everytime

Current GSF Training Programmes GSF Primary Care- 95% Foundation Level

GSF Care Homes - 2300 care homes trained

GSF Acute Hospitals – 40 acute hospitals

GSF Domiciliary care – 300 care workers

GSF Community Hospitals - 42 community hospitals

GSF Dementia Care- 60 candidates

Improving End of Life Care with GSF Head Hands and Heart

HEAD

Evidenced-based knowledge, clinical competence

‘what you know’

HANDS

Systems minded care coordination

‘what you do’

HEART

person-centred compassionate care

‘the way you do it’

Decreased hospital admissions and deaths with GSFCH Training programme

as measured by ADA phases 4-6

Halving hospital deaths

Potential Cost Savings – estimated £30-40k/ care home/ year - £1-2 m / PCT area

The National Dementia Strategy

• Focus on – Diagnosis rates– Dementia Friendly Communities– Dementia Friendly Hospitals– Research

• Missed opportunity of also focusing on good end of life care for people with dementia.

Your understanding of Dementia

• In general is it widely understood that dementia is a terminal illness?

• Is it widely accepted that a person with dementia is an appropriate referral for palliative care?

• How comfortable are you in caring for someone with dementia in the final stages?

Prevalence 1

• Dementia affects ~ 5% people > 65 years– Rises to 20% aged over 80 years– 36% live in a Care Home

• ~820,000 people in the UK have dementia– Likely to double in the next 20 years– Current cost £17 billion

• More than cancer, stroke or heart disease

• ‘A global health and social care crisis’

Prevalence 2

• Only 1/3rd people with dementia have any specialist healthcare assessment or diagnosis– Lack of identification by GP– Stigma

• When they do it is often: – Late in the progression of the illness– In crisis– Too late to enable effective interventions

• National GP Contract ‘Quality and Outcome Framework’ (QOF)– New incentives for increased identification of dementia

and entry on registers

End of Life Care in Dementia – what do we know?

Quality of dying?

NHS Complaints

Certification of death

The trajectory of dementia

Terminal illness?

Why does dementia matter in end of life care?

• Increasing ageing population = higher risk of dementia

• Age is also a big risk factor for most cancers.

• By 2030 - 63,000,0000 people worldwide will have dementia(2)

• By 2030 – 70% of all cancers will occur in elderly people (1)

Why does dementia matter in end of life care?

• ¼ of Acute hospital beds are occupied by people with dementia

• 1/3rd of people in acute hospital beds are in the last year of life

• On average ¾ of care home residents have some degree of cognitive impairment

70% of UK adults said they would be scared of moving into a care home in the future.

Reasons given:-• 53% said the risk of their relative being abused• 18% said risk of their relative losing their independence• 12% said lack of activities for their relative/boredom• 6% said that they would have less influence over decisions about their care• 2% said risk that the home would be closed• 1% said another concern not listed• 8% didn’t know.

Moving between homes

• 45% said this was because their care needs became too high for the home to cope

• 22% said it was because the quality of care was poor

• 7% said it was because the home closed

• only 1% said the reason was the fees being too high

• a further 39% responded ‘other’

• 1% did not answer this question.• nearly a third (32%) of respondents said the person with

dementia had to move care home

Danger of under diagnosis of cancer in people with dementia.

• People with Alzheimers Disease have a 69%lower chance of being treated for cancer. (4)

• A Dutch study with Elderly Care Physicians found that advanced dementia was the leading cause of non-referral of patients with suspected cancer. (5)

• GPs are more likely to discuss end of life care arrangements for patients with cancer than with other conditions such as dementia. (6)

Prognosis

• What is the cause of death in patients with dementia?

– Death due to unrelated cause– Death directly from Dementia– Death as a result of interaction between

dementia and other disease

Age Bands 65 to 74 75 to 84 85+

Cancer      

Number of deaths 33305 43330 20474

Number with dementia 977 3800 5951

% with dementia 2.90% 8.80% 29.10%

Circulatory      

Number of deaths 31548 71469 67962

Number with dementia 941 6319 19992

% with dementia 3.00% 8.80% 29.40%

Respiratory      

Number of deaths 9615 21019 18239

Number with dementia 1817 5224

% with dementia 2.90% 8.60% 28.60%

Advanced Dementia

• Clinical indicators that patients with dementia are approaching the end stages of their disease process:

– Unable to walk without assistance– Urinary and faecal incontinence– No consistently meaningful verbal communication– Unable to dress without assistance– Barthel score <3– Reduced ability to perform activities of living

Gold Standards Framework (2008)

Advanced Dementia

• Plus any one of the following:

– 10% weight loss in previous 6 months without other cause

– pyelonephritis or urinary tract infection, recurrent fevers– serum albumin 25 g/l– severe pressure ulcers – reduced oral intake/weight loss,– aspiration pneumonia

Advanced Dementia

• Common complications include1:– Pneumonia (41%)– Febrile episodes (53%)– Eating problems (86%)

• All are predictors for high 6 month mortality (~50%)

1. Mitchell S et al. NEJM 2009; 361 (16) 1529 – 1538.

Advance Planning

Thanks for looking after me in your magnificent dementia care home .

PLEASE……….Let me be outside in the fresh air as much as possible

Don’t check my blood, or take my blood pressure

Do give me beer, cake, crisps, butter

Put me in front of the DVD box set of England winning the Ashes 2005 on repeat and in HD

Don’t put on any garage music, rap or Craig David

Don’t give me aspirin, anti-hypertensives, statins anti-psychotics,

Do give me pain killers, opiates, antibiotics.

Don’t try and resuscitate me.

Thanks

Recall an episode of care that you were involved in or witnessed with a person

with dementia

Consider:

Attitude

Behaviour

Compassion

Dialogue

1. Did your or their actions value & honour that person?

2. Did you/they recognise & acknowledge the individual uniqueness of that person and others involved?

3. Did you/they make a serious attempt to see your/their actions from the perspective of that person?

If you had dementia

What would you want for yourself?

GSF Dementia training programme

Key Aims

1) Improve person centred care & reduce carer stress

2) Improved assessment of symptoms including pain & distress

3) Improvement in Advance care planning & best interests (MCA)

4) Increase in people dying in their usual place of residence by reducing inappropriate hospital admissions and deaths

Sessions Key topic Comparative Evaluation

Outcome

1. Identify

Right person

Awareness -of impact, dignity, carers

Confidence survey Case studies

Greater knowledge skills and confidence

2. Assess – clinical Right care

Pain management -and symptom control

Questionnaire Greater knowledge +skills in pain assessment

3. Assess – personal Right care

Advance Care Planning- needs and preferences recorded

Case studies Increased numbers offered ACP

4. Plan- care Right place, right time

Reduce hospitalisation - the right to die in the preferred place of residence

Supportive Care AnalysisCase studies

Decreased hospitalisation ↓crisis↓hospital deaths

The GSF Dementia Training programme (4 x 1 1/2 hr sessions – distance learning)

“ the course has changed the whole ethos & atmosphere of the home”

“The GSF dementia training

has been very educational and interesting for

me. I hope that in the future others

will have the same opportunity

“

‘Brilliant

course’

‘Very educationa

l and interesting’

What the course did

for us

GSF End of Life care for people with dementia

We have gained knowledge and

confidence in the correct use of pain

charts which we use as evidence of need to educate the GPs as to the

need for good pain relief.

• For further information

www.goldstandardsframework.org.uk

info@gsfcentre.co.uk

References 1. Yanuki, R. Ries, LA. Cancer in older persons: an international issue in an aging

world. Semin – Oncology. 31(2), 128-136. (2007)

2. Ferri, CP. Prince, M. Brayne, C et al. Global prevalence of dementia: a Delphi consensus study. The Lancet 366 (9503). 2112 – 2117. (2005)

3. Solomons, L. Solomons, J. Gosney, M. Dementia and Cancer. Aging Health. 9 (3): 307 – 319.(2013).

4. Roe, CM. Behrens, MI, Xiong, C et al. Alzheimers Disease and Cancer. Neurology. 74 (2) 106 – 112. (2010)

5. Hamaker, ME. Hamelink, VC et al. Non referral of nursing home patients with suspected breast cancer. Journal of Advanced Medicine: Dir Assoc. 13 (5), 464 – 469. (2012)

6. Abarshi, E. Echfeld, M. Donker, G et al. Discussing end of life issues in the last months of life: a nationwide study among GPs. Journal of Palliative Medicine. 14 (3), 323 – 330. (2011)

7. McCormick, WC. Kukull, WA, van Belle, G et al. Symptom patterns and comorbidity in the early stages of Alzheimers Disease. Journal of American Geriatric Society: 42 (5) 517 – 521. (1994)

8. Iritani, S. Toghi, M. Miyata, H. Ohi, G. Impact of dementia or cancer discovery and pain. Psychogeriatric. 11 (1), 6 -13. (2011).