Support and Guidance in Support and Guidance in Caring for a Person with a Caring for a Person with a

Brain TumourBrain Tumour

Tony Carlin,Tony Carlin,

Head Medical Social Worker,Head Medical Social Worker,

St. Luke’s HospitalSt. Luke’s Hospital

OverviewOverview Overview of Brain TumoursOverview of Brain Tumours

History of the Brain Tumour Support Group in History of the Brain Tumour Support Group in DublinDublin

The patient’s experienceThe patient’s experience

The family/carers experienceThe family/carers experience

Talking to childrenTalking to children

Structure of the BrainStructure of the BrainBrain tumours located in different parts of the brainBrain tumours located in different parts of the brainSigns and symptoms vary depending the locationSigns and symptoms vary depending the location

Frontal lobe – complicated thinkingFrontal lobe – complicated thinking Temporal lobe – body movementTemporal lobe – body movement Parietal lobe – touch and tasteParietal lobe – touch and taste Occipital lobe – visionOccipital lobe – vision Cerebellum – body coordinationCerebellum – body coordination Brain stem – basic functions of the body Brain stem – basic functions of the body

necessary for life e.g. breathing, heart rate and necessary for life e.g. breathing, heart rate and digestiondigestion

Signs and symptoms of a Brain TumourSigns and symptoms of a Brain Tumour Most people will suffer from a combination of the following signs and symptoms Most people will suffer from a combination of the following signs and symptoms

however, many will have specific traits associated with particular tumour siteshowever, many will have specific traits associated with particular tumour sites

Headaches – severe repeated and associated with vomitingHeadaches – severe repeated and associated with vomiting

Visual problems – double vision, blurring decreased peripheral visionVisual problems – double vision, blurring decreased peripheral vision

Speech difficulties – slurring, jumbling words, difficulty expressing oneselfSpeech difficulties – slurring, jumbling words, difficulty expressing oneself

Memory loss - short termMemory loss - short term

Weakness/paralysis – similar to stroke symptomsWeakness/paralysis – similar to stroke symptoms

Vomiting – sudden and projectile and usually unrelated to foodVomiting – sudden and projectile and usually unrelated to food

Seizures - 20-50% of people with brain tumours suffer with epilepsySeizures - 20-50% of people with brain tumours suffer with epilepsy Personality changes – may be subtle and noticed only by close contacts such as loss Personality changes – may be subtle and noticed only by close contacts such as loss

of social restraint, inappropriate behaviour, disorientation and confusionof social restraint, inappropriate behaviour, disorientation and confusion

Different types of Brain TumourDifferent types of Brain Tumour

Two categories of tumourTwo categories of tumour PRIMARY - Glial and Non GlialPRIMARY - Glial and Non Glial SECONDARY – MetastaticSECONDARY – Metastatic

PRIMARY BRAIN TUMOURSPRIMARY BRAIN TUMOURSGlial TumoursGlial TumoursAlso known as Also known as gliomas. gliomas. Gliomas are graded 1-4.Gliomas are graded 1-4. If the tumour is low grade (1-2) - tends to be slow growingIf the tumour is low grade (1-2) - tends to be slow growing Higher grades (3-4) highly malignant and grow rapidlyHigher grades (3-4) highly malignant and grow rapidly

Most Common types of gliomasMost Common types of gliomas1.1. Astrocytoma – most common comes from cells know as astrocytes, grade 4 Astrocytoma – most common comes from cells know as astrocytes, grade 4

astrocytoma is frequently referred to as a Glioblastoma Multiformeastrocytoma is frequently referred to as a Glioblastoma Multiforme2.2. Oligodendroglioma – slightly more slow growing that the astrocytomasOligodendroglioma – slightly more slow growing that the astrocytomas3.3. Mixed gliomas - this is when there is a mixture of types of cells from which the Mixed gliomas - this is when there is a mixture of types of cells from which the

tumour growstumour grows4.4. Ependymomas – a rare form of tumour that develops from cells that line the Ependymomas – a rare form of tumour that develops from cells that line the

ventricles of the brainventricles of the brain

Different types of Brain Tumour 2Different types of Brain Tumour 2Non Glial TumoursNon Glial Tumours These tumours originate from structures outside the brain tissue eg. meninges, These tumours originate from structures outside the brain tissue eg. meninges,

pituitary gland or the acoustic nervepituitary gland or the acoustic nerve

Most common type of non-glial tumoursMost common type of non-glial tumours Meningioma - usually occur on the covering of the brain usually in adults – nearly Meningioma - usually occur on the covering of the brain usually in adults – nearly

always benignalways benign

Acoustic neuroma – generally occur along the auditory nerve which can lead to Acoustic neuroma – generally occur along the auditory nerve which can lead to deafnessdeafness

Pituitary tumour – mostly benign, can cause hormone imbalances and visual Pituitary tumour – mostly benign, can cause hormone imbalances and visual disturbancesdisturbances

Lymphoma – malignant tumours of the lymphocytes. Tend to occur in patients Lymphoma – malignant tumours of the lymphocytes. Tend to occur in patients whose immune system is compromised. While unusual they can occasionally whose immune system is compromised. While unusual they can occasionally present in the brain.present in the brain.

Secondary Brain TumoursSecondary Brain Tumours Tumours which start in another part of the body and spread to the brain. Also know Tumours which start in another part of the body and spread to the brain. Also know

as brain secondaries. Most common site for the primary tumour is the lung, breast as brain secondaries. Most common site for the primary tumour is the lung, breast or malignant melanomasor malignant melanomas

History of Dublin Brain Tumour History of Dublin Brain Tumour Support GroupSupport Group

Group founded in 1991 by Joan WynneGroup founded in 1991 by Joan Wynne Joan’s husband Brian had a brain tumourJoan’s husband Brian had a brain tumour Arthur Thompson’s letter to Gay Byrne ShowArthur Thompson’s letter to Gay Byrne Show Lonely, isolated, unable to work, restrictedLonely, isolated, unable to work, restricted Joan organised a meeting between her husband and Joan organised a meeting between her husband and

Arthur ThompsonArthur Thompson Meeting in a local pubMeeting in a local pub Venue changed to St. Anne’s HospitalVenue changed to St. Anne’s Hospital St. Luke’s Hospital from 1997 to present timeSt. Luke’s Hospital from 1997 to present time Meetings every second Wednesday of the month atMeetings every second Wednesday of the month at 7.30 pm7.30 pm Groups in Cork and GalwayGroups in Cork and Galway

Dublin Brain Tumour Support GroupDublin Brain Tumour Support Group

Runs from 7.30 pm to 9.30 pmRuns from 7.30 pm to 9.30 pm Regular attendance at the groupRegular attendance at the group Patients and relatives – not always St. Luke’s Patients and relatives – not always St. Luke’s

patientspatients Facilitated by Social Worker, Nurse and Facilitated by Social Worker, Nurse and

RadiotherapistRadiotherapist Guest speakers – short presentationGuest speakers – short presentation Break into separate patient and relatives’ groupsBreak into separate patient and relatives’ groups Opportunities for follow up workOpportunities for follow up work

The Cancer JourneyThe Cancer Journey Cancer journey – period of significant change for patients and their Cancer journey – period of significant change for patients and their

familiesfamilies

A cancer diagnosis can be a lonely experience for the patient whether A cancer diagnosis can be a lonely experience for the patient whether he/she is part of a loving family/network of friends or living alonehe/she is part of a loving family/network of friends or living alone

A diagnosis of cancer effects every individual within a family differentlyA diagnosis of cancer effects every individual within a family differently

Patients and their families often find the uncertain period after treatment Patients and their families often find the uncertain period after treatment is completed to be the most challenging part of the cancer journeyis completed to be the most challenging part of the cancer journey

Therefore it is important for patients and their families to draw on as Therefore it is important for patients and their families to draw on as much support as possible during this periodmuch support as possible during this period

Good communication within families and support networks is Good communication within families and support networks is extremely important in helping both patient and family to cope with a extremely important in helping both patient and family to cope with a diagnosis, treatment and in particular the uncertain period thereafterdiagnosis, treatment and in particular the uncertain period thereafter

Common feelingsCommon feelings experienced by experienced by the Brain Tumour Patientthe Brain Tumour Patient

AnxietyAnxiety FearFear AngerAnger FrustrationFrustration Isolation and lonelinessIsolation and loneliness Disappointment/ dissatisfactionDisappointment/ dissatisfaction Confusing and conflicting emotionsConfusing and conflicting emotions ReliefRelief

The Challenges faced by a The Challenges faced by a Brain Tumour Patient Brain Tumour Patient

Gruelling treatmentGruelling treatment Uncertainty about prognosisUncertainty about prognosis Physical symptoms and side-effects of treatmentPhysical symptoms and side-effects of treatment Visible/outwardly-apparent signs of illnessVisible/outwardly-apparent signs of illness Loss of independenceLoss of independence Unpredictable behavioural & mood changesUnpredictable behavioural & mood changes Considerable adjustment to lifestyle changesConsiderable adjustment to lifestyle changes

ChallengesChallenges for the patient (cont’d) for the patient (cont’d)

Availability of timeAvailability of time

Changes in routineChanges in routine

Changes in support networksChanges in support networks

Uncertainty about treatment outcomesUncertainty about treatment outcomes

Others expectationsOthers expectations

Time and RoutineTime and Routine

End of treatment – a lot of time on his/her handsEnd of treatment – a lot of time on his/her hands Not well enough to return to work but no longer Not well enough to return to work but no longer

has regular treatment to attendhas regular treatment to attend Patient may find uncertainty and discomfort in Patient may find uncertainty and discomfort in

the fact that his/her daily routine has changed the fact that his/her daily routine has changed significantlysignificantly

This will require a period of adjustmentThis will require a period of adjustment Facing up to thoughts and fears which may have Facing up to thoughts and fears which may have

been avoided while receiving treatmentbeen avoided while receiving treatment

Managing Time and Alterations to Managing Time and Alterations to RoutineRoutine

Allow the patient time to adjust to changes Allow the patient time to adjust to changes in their routinein their routine

Encourage them to occupy their time with Encourage them to occupy their time with things they enjoythings they enjoy

Make sure they have plenty of time to rest Make sure they have plenty of time to rest and recoupand recoup

Changes in support networksChanges in support networks While on treatment patients and their families may have While on treatment patients and their families may have

access to resources within the hospital settingaccess to resources within the hospital setting

Be aware that some resources within the hospital are still Be aware that some resources within the hospital are still available to the patient and his/her family after treatment available to the patient and his/her family after treatment such as support groups, complementary therapy, such as support groups, complementary therapy, counselling etc.counselling etc.

Some patients may have developed a network of support Some patients may have developed a network of support within their own patient group – encourage the person to within their own patient group – encourage the person to maintain this if possible maintain this if possible

Supportive family members, friends and neighbours are Supportive family members, friends and neighbours are in some cases not as available after the completion of in some cases not as available after the completion of treatmenttreatment

UncertaintyUncertainty

When treatment is active, patients frequently feel When treatment is active, patients frequently feel reassured that their disease is being monitoredreassured that their disease is being monitored

After treatment the patient may feel uncertainty After treatment the patient may feel uncertainty particularly about the possibility that the cancer particularly about the possibility that the cancer may have spread or recurredmay have spread or recurred

This can be further exacerbated by unexplained This can be further exacerbated by unexplained symptoms or side effects of treatmentsymptoms or side effects of treatment

ExpectationsExpectations

When treatment is complete, those close to the When treatment is complete, those close to the patient may have varied expectations relating to patient may have varied expectations relating to his/her treatment and prognosishis/her treatment and prognosis

Some may expect the patient to feel better Some may expect the patient to feel better instantly, and return to normal routinesinstantly, and return to normal routines

Patients themselves may feel under pressure to Patients themselves may feel under pressure to remain positive at all timesremain positive at all times

What a Patient NeedsWhat a Patient Needs

Supportive relatives and carers Supportive relatives and carers Understanding friends and work colleaguesUnderstanding friends and work colleagues Appropriate servicesAppropriate services Relevant information & some opportunities to Relevant information & some opportunities to

ask medical questionsask medical questions Realistic reassuranceRealistic reassurance Sensitivity Sensitivity RestRest Opportunities to talkOpportunities to talk

Why Talk?Why Talk?

Talking is the best way to communicate thoughts and Talking is the best way to communicate thoughts and feelingsfeelings

We are in a better position to either help our loved one/ if We are in a better position to either help our loved one/ if we are aware of what is on his/her mindwe are aware of what is on his/her mind

Sharing fears and anxieties can reduce the perceived Sharing fears and anxieties can reduce the perceived burden and provide an alternative perspectiveburden and provide an alternative perspective

Suppressing thoughts/ feelings can often make one feel Suppressing thoughts/ feelings can often make one feel worse and potentially harm one’s mental healthworse and potentially harm one’s mental health

Tips for being a good listenerTips for being a good listener

Establish if the person who is ill wants to talkEstablish if the person who is ill wants to talk Encourage him/her to talk with an atmosphere of opennessEncourage him/her to talk with an atmosphere of openness Listen and show that you’re listeningListen and show that you’re listening Don’t forget other forms of communication (i.e. non-verbal Don’t forget other forms of communication (i.e. non-verbal

forms such as nodding, smiling, hugs)forms such as nodding, smiling, hugs) Don’t give advice unless it is requestedDon’t give advice unless it is requested Use humour where appropriateUse humour where appropriate Don’t be afraid of silenceDon’t be afraid of silence Bear in mind that you may never achieve full Bear in mind that you may never achieve full

understanding of exactly what your loved one is facing but understanding of exactly what your loved one is facing but the harder you try, the better communication between you the harder you try, the better communication between you will be (and your efforts will be appreciated)will be (and your efforts will be appreciated)

Obstacles to Good CommunicationObstacles to Good Communication

Reluctance to talk by either partyReluctance to talk by either party Fear of upsetting/ agitating the other Fear of upsetting/ agitating the other

person by talkingperson by talking Inability to express thoughts/ feelings Inability to express thoughts/ feelings

effectively by either partyeffectively by either party Cognitive deficitsCognitive deficits Existing relationship problems/ breakdownExisting relationship problems/ breakdown

How to help in practical waysHow to help in practical ways

If you find it difficult to talk, you can communicateIf you find it difficult to talk, you can communicate

support by helping in other ways;support by helping in other ways; Become Informed (show interest)Become Informed (show interest) Practical help can include, doing shopping or Practical help can include, doing shopping or

laundry, or simply attending a hospital laundry, or simply attending a hospital appointment with the patient and making a appointment with the patient and making a commitment to helpcommitment to help

Give the person space/ time to recoup when it is Give the person space/ time to recoup when it is needed, be conscious of over-crowdingneeded, be conscious of over-crowding

Challenges faced by CarersChallenges faced by Carers Rapid onset and progressionRapid onset and progression Understanding cognitive and behavioural changes such as Understanding cognitive and behavioural changes such as

memory loss, impaired reasoning and processing, attention memory loss, impaired reasoning and processing, attention deficits, language difficulties and ability to perform multiple deficits, language difficulties and ability to perform multiple tasks at one timetasks at one time

Dealing with depression and personality changesDealing with depression and personality changes Dealing with impulsiveness or aggressive behaviourDealing with impulsiveness or aggressive behaviour Uncertainty surrounding prognosisUncertainty surrounding prognosis Constantly challenged to solve problemsConstantly challenged to solve problems Forced to make decisions as care needs changeForced to make decisions as care needs change Often can feel unprepared for the new role of carer Often can feel unprepared for the new role of carer High levels of stressHigh levels of stress Poor physical and emotional healthPoor physical and emotional health Career sacrificesCareer sacrifices Loss of earningsLoss of earnings

Feelings prevalent amongst CarersFeelings prevalent amongst Carers

Sense of being overwhelmedSense of being overwhelmed - both physically and emotionally - both physically and emotionally

DenialDenial - can persist through the chronic phase of an illness when patient is - can persist through the chronic phase of an illness when patient is clearly deterioratingclearly deteriorating

AngerAnger - - sometimes directed toward the patient or the healthcare system sometimes directed toward the patient or the healthcare system

Resentment and GuiltResentment and Guilt

Depression and AnxietyDepression and Anxiety

Isolated/Social StigmaIsolated/Social Stigma- assume the burden of the caring role without help- assume the burden of the caring role without help

Making senseMaking sense - This also gives rise to hope and a sense of control. - This also gives rise to hope and a sense of control. Information helps to make sense of the diagnosisInformation helps to make sense of the diagnosis

These feelings can remain hidden from the outside and indeed from other These feelings can remain hidden from the outside and indeed from other family membersfamily members

Roles and responsibilities of CarersRoles and responsibilities of Carers CareCarerrs are constantly challenged to solve problems and to make decisions as care s are constantly challenged to solve problems and to make decisions as care

needs change.needs change.

Carers often have to juggle time, jobs, money, energy and roles.Carers often have to juggle time, jobs, money, energy and roles.

Assisting with or centrally responsible for physical activities such as washing and Assisting with or centrally responsible for physical activities such as washing and dressing, administering medication.dressing, administering medication.

Managing the limitations of activity.Managing the limitations of activity.

Carers are often physically and emotionally exhausted.Carers are often physically and emotionally exhausted.

Comforting role - preventing isolation, providing emotional support to patient, children Comforting role - preventing isolation, providing emotional support to patient, children and other family members or relatives.and other family members or relatives.

Carers have to struggle with the question - How much do I tell the children?Carers have to struggle with the question - How much do I tell the children?

When and how much information? This can be difficult due to the uncertainty around When and how much information? This can be difficult due to the uncertainty around treatment and prognosis.treatment and prognosis.

Feeling of neglecting the children.Feeling of neglecting the children.

Talking to children and young people Talking to children and young people

PreparePrepare and bear in mind…. and bear in mind….

Children are curious by nature & often know Children are curious by nature & often know more than we thinkmore than we think

Children can sometimes express their thoughts Children can sometimes express their thoughts and feelings through behavioural changesand feelings through behavioural changes

Children quickly perceive changeChildren quickly perceive change

Talking to children and young people(2)Talking to children and young people(2)

Try to promote an atmosphere of open communicationTry to promote an atmosphere of open communication Establish how much they know alreadyEstablish how much they know already Be honest (if you don’t know the answer to a question Be honest (if you don’t know the answer to a question

say ‘I don’t know’)say ‘I don’t know’) Use the word ‘Cancer’Use the word ‘Cancer’ Be aware of developmental stages, and use age-Be aware of developmental stages, and use age-

appropriate languageappropriate language Allow them to use play/ artwork to express their feelingsAllow them to use play/ artwork to express their feelings Reassure children that they will be looked after, without Reassure children that they will be looked after, without

being unrealisticbeing unrealistic Allow children to feel involvedAllow children to feel involved

Caring for CarersCaring for Carers Caring can take many formsCaring can take many forms

Caring is stressfulCaring is stressful

Stress can effect you physically and emotionallyStress can effect you physically and emotionally

Carers Association of Ireland Carers Association of Ireland www.carersireland.com

National Careline 1800 240 724National Careline 1800 240 724

Carers Leave Carers Leave –– 104 weeks 104 weeks

Private CarersPrivate Carers

Managing the Stress of CaringManaging the Stress of Caring ‘‘Running on EmptyRunning on Empty’ who cares for the caregivers?’ who cares for the caregivers? Five basic strategies can help control the effects of Five basic strategies can help control the effects of

stressstress

1.1. Set realistic goalsSet realistic goals

2.2. Establish your limitsEstablish your limits

3.3. Ask for and accept helpAsk for and accept help

4.4. Take care of yourselfTake care of yourself

5.5. Involve other peopleInvolve other people

Getting External SupportGetting External Support

Hospital-Based Supports (social work, psycho-Hospital-Based Supports (social work, psycho-oncology, complementary therapies, Clinical oncology, complementary therapies, Clinical Nurse Specialist & information from the medical Nurse Specialist & information from the medical team where necessary) team where necessary)

Community- Based Support (PHN, home care Community- Based Support (PHN, home care teams, GPs, neighbours & friends)teams, GPs, neighbours & friends)

Support Centres/ Groups (ARC House, Gary Support Centres/ Groups (ARC House, Gary Kelly Centre, Cuisle Centre, ICS counselling Kelly Centre, Cuisle Centre, ICS counselling service, countrywide support groups)service, countrywide support groups)

Find someone to lean on!Find someone to lean on!

Questions ?Questions ?