Improving Communication - Home - Alzheimer Society of …€¦ ·  · 2013-04-16•Improving communication between the person diagnosed with dementia (PWD), family & MDT •Why is

Improving Communication

Dementia Management

for the future

Points to consider today:

• Improving communication between the person diagnosed with dementia (PWD), family & MDT

• Why is early referral to SALT services important & who should make the referral?

• What can the SALT offer?

• Difficult decisions-who makes them?

• Our thoughts for the future

National Dementia StrategySpeech & Language Therapists’ Contribution

Overall communication-links with MDT/Hospitals

• Early referral is crucial, yet where are the referrals?• We would like to receive routine referrals to the Primary Care

Team/appropriate out-patient service once diagnosis is made.• Ideally a system where diagnosis prompts automatic community

service referrals would exist. GP/Consultant education may be necessary for this to take place.

• We would then meet family and PWD, provide support and explain our role and keep in regular contact. This also empowers the family as they know where to turn if a difficulty arises.

• Negative consequences of meeting a family in the moderate-late stages of disease

• Family miss out on education, support and advice, and the ability to maximise quality time with the PWD.

• From a medical standpoint, community SALTs often do not receive referrals for swallowing difficulty until the person has presented with chest infection and/or aspiration pneumonia and often when the issue of alternative feeding has already been broached.

Service Provision-postcode lottery

• Some centres now have well-established

speech and language therapy services, which are integral within the multidisciplinary team.

• Other parts of the country have no access to SALT for adults, while in other areas there will be no SALT cover for Nursing Home residents.

• Inequity in service provision across the county, which needs to be addressed.

• One admission to hospital for aspiration pneumonia costs between €7,500-22,000 depending on length of stay/ICU admission etc.

Why early referral? & Why SALT?(Royal College of SALTs Position Paper on Dementia, 2005)

• The notion of personhood -all people with dementia, at all stages, have something to communicate.

• Stokes (2000) has argued that challenging behaviour is often an attempt by the person to make sense of the environment or communicate an unfulfilled need.

• Through careful communication and education/support from SALT & MDT, the caregiver can take steps to understand the hidden meaning concealed by the confusion and therefore take steps to reduce the incidence of challenging behaviour.

• It can therefore be seen that optimising the communication skills of both the person with dementia and of the caregivers is a central theme to providing person-centred care.

• Assessment and treatment should be individualised, and should draw from the broad range of approaches available

• It is therefore essential that all people with dementia and their carers are able to access specialist services such as speech and language therapy.

What we do..The SLT can support people with dementia; caregivers and the wider health and social care team in a variety of ways.

• Specific analysis of language disorder to inform differential diagnosis

• Provision of specific programmes/therapy/communication aids to maximise function

• Improved communication has an impact on:

– literacy -social skills

– peer relationships -self-confidence

– and behaviour (RCSLT 2009)

• Ensure carers expectations of communication are realistic

• Reduce stress and burden on caregivers by providing specific management strategies

• Maintenance of an ongoing interpersonal relationship between the individual and carers

• Maintenance of function in later stages of the disease

• Enable carers and other professionals to provide the optimum environment for communication and eating and drinking

• Contribution to MDT problem solving and care planning

• Assessment of capacity to consent to treatment and care

• Act as advocate for people with communication disorder

• Train others to manage communication and dysphagia

• Specialist input to inform decision making around non-oral feeding

• Specialist input to clinical networks for policy development, risk management,

ethical decision-making, research

and audit

Consequences of no SALT service• Decrease in quality of life and sense of well being for

both the person and their carers. The loss of meaningful interaction and conversation places increased pressure on the caring relationship

• Reduced access to and benefit from necessary interventions, i.e. communication therapy, life story books, group therapy, communication aids, education etc

• Social exclusion• Increased level of dependence at an earlier stage• Avoidable death due to malnutrition, choking and

aspiration pneumonia• Delay in diagnosis and/or incorrect diagnosis• The SLT is often the person best qualified to advise on

the most effective means of presenting information and choices to the person with dementia who has significant communication disorder, in a way that maximises their opportunity to exert free choice.

• An Alzheimer’s Society report on eating and drinking in dementia (2000) found that while a third of respondents were concerned about swallowing difficulties, few (8% carers and 40% care professionals) had obtained SLT advice.

Eating and Drinking

Food for thoughtAlzheimers Society Report, 2000

• Carers’ experiences in helping people with dementia to eat.

• 3777 questionnaires completed• An underlying issue is that the 'lived experience' of

carers of people with dementia in relation to food is overwhelmingly difficult.

• ‘Many carers reported that their relative with dementia had died and had lost significant weight in the process. However, while the end of life must be an issue for many, very few of 3777 reported it.

• We highlight this as an issue which is conspicuous by its absence and this may indicate a lack of discussion between professionals, who appear to be concerned and relatives, who may not have the opportunity to discuss this’.

Dysphagia dilemmas

• Ethical feeding issues and decision making specific to dementia

• The Alzheimer’s Society has stated that ‘quality of life rather than length of life should be prioritised’.

• Nevertheless, data from the British Artificial Nutrition Survey indicate that at least 109 new patients with dementia and 582 established cases were being fed artificially in the UK community in 2007

Modified Diet/Fluid and environmental changes vs. Alternative Feeding?

NG- Naso- gastric tube

PEG- Percutaneous endoscopic gastrostomy

• In people with dementia, artificial hydration and feeding when compared to hand feeding has no evident benefits in terms of survival (Meir et al, 2001; Murphy and Lipman, 2003).

• Furthermore, artificial feeding does not reduce the risk of aspiration pneumonia (Finucane et al, 1999; Knebl et al,1999).

• Despite this evidence up to 44% of

people with dementia die with

feeding tubes in situ (Gillick, 2000).

Tube Feeding-who is consenting?

• Consent before placing a PEG is essential.• However, NGTs are sometimes placed without

similar discussion. Often, the most basic question has neither been posed nor answered –is feeding appropriate at all?

• Requests for PEG placement are often received after NGT feeding has commenced without due process of consent or ethical discussion. Even in the short term, NGT feeding requires proper consent and consideration of best interests with benefit weighed against potential complications.

• Is our ‘communication’ with families and the person with dementia appropriate & timely? Is the crisis point in A&E or at end of life, really the correct time to ask these questions??

End of life-difficult decisions

• Managing food refusal in the community setting, either in home or nursing home can be difficult for family and staff.

• Preparing the family for this phase and reducing ‘panic’ of perceived starvation. This can be very difficult for all involved.

• Appetite is often severely reduced in terminal disease and the sensations of hunger and thirst are suppressed. For those who are severely cognitively impaired, there is little evidence that hunger or thirst are perceived significantly. Indeed, such patients may resist the efforts by carers to offer food or fluids. Such rejections may be no more than reflex responses.

• Small amounts of intake encouraged for quality of life.• What about those patients on sub-cut fluids who live for weeks

without nutrition?• The duration between withholding nutrition and death can be as

long as 10 weeks but where hydration is also withdrawn it may be as short as three days and usually no longer than 14. If water is given in the absence of food, survival is long enough for death from nutritional deprivation to occur.

• In the dying phase, a patient’s desire for food and drink lessens. Good mouth care rather than attempting to feed a patient becomes the more appropriate intervention.

• This is one of the goals of care outlined and monitored in the Liverpool Care Pathway for the Dying Patient. It is important at this stage to consider the appropriateness of continuing PEG or NGT feeding if this has previously been carried out.

• Indeed, the discontinuation of iv fluids must also be considered, as at this late stage it often only serves to exacerbate pulmonary oedema, peripheral oedema and increased secretions, which the semi-conscious patient is unable to manage. Clear reasons should, of course, be identified for withdrawal of nutrition and hydration.

Changing emphasis in end-of-life care• Increased palliative training and competence among all those

caring for patients nearing the end of life-referrals are often received at this late stage for assessment of swallow.

• Such training would include assessment and symptom management as well as communication skills including how and when to initiate crucial conversations with patients around end-of-life issues.

• Increased confidence in the use of advance care plans by patients supported by the legislation.

• It will be in the forging of relationships with other services and specialties, and in promoting the highest standards of palliative medicine by all those involved with patients at the end of life, that we can be confident the end of life phase is handled appropriately.

• ‘I think we need to focus a lot of support on training family and carers to continue to give food and fluids in as safe and comfortable a way as possible’.

So… final points for discussion• Equitable service to all people diagnosed with dementia

regardless of postcode or residential setting

• Early referral and a system which prompts automatic community referral and supports once diagnosis is made

• Where are we with advance directives?

• Compulsory training in communication strategies and management of eating, drinking & swallowing difficulties for all carers, both professional and familial.

• Early education and discussion re families’ and patients’ views on alternative feeding

…& finally, our aim is for ‘improved communication’ between ourselves as professionals, between professionals and the client, and ultimately to improve communication and understanding between the person with dementia and their family.

Thank you for your attention

Any questions?

References• Bartlett, Blais, Tamblyn, Clermont & MacGibbon (2008). Impact of patient

communication problems on the risk of preventable adverse events in acute care settings. Canadia Medical Association Journal. 178 (12) pp. 1555 - 1562

• Communicating Quality 3, RCSLT (2006)• IASLT (2007). Standards of practice for speech and language therapists on the

management of feeding, eating, drinking and swallowing disorders.• Marsh, Bertranou, Suominen & Venkatachalam (2010). Matrix Evidence. An economic

evaluation of speech and language therapy.• Mental Capacity and Guardianship Bill (2008) available at www.oireachtas.ie• Pollens (2004). Role of the Speech-Language Pathologist in Palliative Hospice Care.

Journal of Palliative Medicine. 7(5), 694 – 702• RCSLT (2005). Speech and Language Therapy for people with Dementia. Position

Paper• RCSLT Resource Manual for Commissioning and Planning Services for SLCN:

Dysphagia (2009)• Alzheimer’s Society (2000) Food for thought Alzheimer’s Society, London• Standards of Practice for Speech and Language Therapists on the Management of

Feeding, Eating,• Drinking and Swallowing Disorders (Dysphagia)2012• Royal College of Physicians and British Society of Gastroenterology. Oral feeding• difficulties and dilemmas: A guide to practical care, particularly towards the end of

life.London: Royal College of Physicians, 2010.

• Moral dilemmas associated with the withdrawal of artificial hydration

Gillian Blakely, Jennifer Millward, British Journal of Nursing, 2007, Vol 16, No 15