Dementia: Quality of Care - Lorraine Burgess presentation

The Christie NHS Foundation Trust

Ethics, Dilemmas and Decisions inCaring for People with Cancer with Dementia

Lorraine BurgessMacmillan Dementia Consultant NurseThe Christie Hospital NHS Foundation Trust


Dementia Clinical NICE Guidelines 42 ( DOH)

“Dementia Care should incorporate a person centred approach from the time of diagnosis until death. The aim should be to achieve best quality of life for the people with Dementia and enable the person with dementia to die with dignity in a place of their choice and to support carers during their bereavement in anticipation of or following death”. DOH ( 2006)


Commission on Hospital Care for Frail Older People • A BASIC CHECKLIST FOR BETTER - CARE PROVISION FOR FRAIL OLDER

PEOPLE • 1. A workforce skilled in both health and social care that recognises the specific

needs of older people, values them as individuals, involves them in care and relates to them in a compassionate way. Older people in hospital need to be supported to manage transitions, improve their health and be guided to a good end of life, where appropriate, in a place of their choice.

• 2. A health and care system with a serious, sustained emphasis on healthy ageing, exercise and prevention to address the determinants of need.

• 3. Primary and community clinicians who are equipped to assess and manage older people with multiple long term conditions properly, in longer consultations which include meaningful care planning.

• 4. “Rapid response at home” services for frail older people, in which “first responders” would work with ambulance trusts to see if the older person can be treated safely and successfully at home (including care homes).

• 5. Care planning decisions that are taken very early, and by senior clinicians, when older people require hospital treatment. This minimises ward moves and leads to the right treatment by the right professionals with no delays and timely discharge.


NHS Five Year Vision

Acute hospitals and Integrated Care

•A core part of the vision in the NHS five year forward view is a fundamentally different role for acute hospitals. Hospitals in England and elsewhere face significant challenges as a result of rising demand and the changing needs of the population, and they will not be able to meet these challenges by continuing to work alone. Instead, acute trust leaders need to embrace a system-wide perspective and work increasingly closely with primary care, community services, social care and others


Dementia and Cancer

Setting the scene…………….


Dementia and Cancer

• Ageing population has led to rapid increase in prevalence of dementia. In 2030 70% of all cancers will occur in elderly people

• Both diseases of the older person• Safe to assume that co-existence is high• Individuals with both conditions pose unique challenges in clinical

practice owing to impairments in understanding, communication, capacity to consent and issues related to dying

• Relatives are often called to address and make surrogate decisions which can be distressing for both person with dementia and relative.


Dementia and Cancer

• Lower rates of cancer in people with dementia • Under diagnosis - under report symptoms- more advanced stages

often to late to be treated - half of population accidently discovered • Treatment is individual – require discussions that risk may outweigh

the benefits. QoL in longer term should be an outcome. • Little known about care given to small number of patients who have

both conditions but some studies suggest poor care and suffering. Soloman et al (2013)


The relationship between cancer and dementia

Lack of studies looking at this relationship

Mainly focus on mortality

Patients often complain of cognitive dysfunction

Often related to treatment side affects, fatigue, depression etc (Rogers et al, 2008)

Some studies show an inverse relationship

Lower rates of Alzheimer’s in cancer survivors

Lower rates of cancer in people with Alzheimer’s(Roe et al, 2005, Attner et al, 2010, Roe et al, 2010 and Driver et al, 2012)


The relationship between cancer and dementia?Continued…

Mortality rates•8.5% with no dementia died within 6 months•33% with dementia died within 6 months (Raji et al, 2008)

•Pts without dementia lived 4½ years post diagnosis•Pts with moderate / severe dementia, just 8 months (Robb et al, 2009)


The implications of hospital admissions

• Hospital stays = poorer outcomes

• Longer inpatient stays

• Increased chance of discharge to institutional care

• Worsening of dementia symptoms

• Higher mortality rates (Alzheimer’s Society, 2009)


How can dementia complicate treatment?

• Impaired capacity

• Difficulties understanding implications of illness

• Failed appointments

• Reduced ability to follow treatment plans

• Under-reporting of treatment-related symptoms

• Reduced ability to self-care

• Carer’s put under increasing strain


Case Study – Mrs Mary Quant

•Cognitive impairment

•Lives alone

•Supportive son and daughter in law

•Retired Beautician

•62 year old lady

Admitted - Non Hodgkins Lymphoema

•Partner passed away 6months earlier


Mary

• 62 year old lady• Referred to the Christie for treatment of NHL• Decision to treat with 6 cycles of chemotherapy


Concerns

• Very poor short term memory.• Frail-underweight• Lived alone- concerns non compliance of treatment and

consent to treatment• Request for Mental Capacity Assessment in relation to

decision to treat• What shall we do?


Interaction

• Admitted- Quiet, co-operate, pleasant but isolated as no-one spoke to her due to her limited conversation. Not eating well. Would get lost on ward. Staff made aware of why this happening.

• Encouraged to go to dayroom to eat- appetite improved. Familiar objects encouraged by bed and staff encouraged to engage with her.

• Conversations would include her role as beauty therapist. With this she would become very animated and alive. Staff brought in bridal magazines for her to look at.


Interaction

• Staff began to see Mary as a unique individual rather than a patient with a dementia, they started to enjoy each others company and had more interaction. Staff became protective of her.

• Words became unimportant it was the interaction and valuing of her as a person.

• I began supporting/educating family and encouraged them to think about the future.


Interactions• I sat with Mary - she slept on and off and was amazingly when

awake very animated and her conversation flowed• We “people watched” and she made comments about the nursing

staff “ ooh isn’t she nice”• She appeared comfortable and content• Spoke of her life and said “ I’ve had a good life, I’m tired now”• I cleaned her nails and massaged her hands. She asked if she

could have moisturiser on face and I thought what the heck.


Outcome

For Mary• Well being promoted• Improved quality of Life• Enhanced Care• Recognised Person hood

and seeing her as an

unique individual with her

own needs• Promoted communication, not

always verbal

Carer• Felt Supported• Education• Planning for future• Addressed Psychological and

emotional needs• Chance to talk


Outcome

For Nurses• Satisfaction• Education through action• Communication• Support• Recognised Need• Person Centred Care• Holistic• Importance of sharing and

gathering information• Reflection

Myself• Change Practice• Multi professional working• Palliative Approach• Education• Action and supporting nurses• Screening and assessment• Appropriate discharge

arrangements


In summary

.•Although people with cancer have dementia they must be given the opportunity for treatment- however discussions are vital from referral and should be on-going throughout treatment

•People with dementia can live with quality in their lives until they take their last breathe. With good care we can help them achieve that


Finally

• “ You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to help you live until you die”

Simard J ( 2013) The End of Life Nameste

Care Programme for people with Dementia.

Health Professionals Press

Dementia: Quality of Care - Lorraine Burgess presentation

Healthcare