[Session 2: version 2]

START: Strategies for Relatives

Session 6:

Planning for the future

Facilitator Version

Numbers in blue boxes let you know how long each section should take.

Information in yellow boxes give instructions on how to facilitate tasks, as well as prompts for feedback and discussion.

Quotations in orange boxes should be said as written.

Facilitator Key

Copyright 2018 Gill Livingston and Penny Rapaport. Licensed under CC BY-NC-ND 4.0 For permission requests, write to the publisher addressed “Attention: Permissions Coordinator” at the address below: UCL Division of Psychiatry 6/F Maple House 149 Tottenham Court road London W1T 7NF United Kingdom

This manual was adapted from original (Dolores Gallagher-Thompson and colleagues, Stanford

University School of Medicine, 2002) by University College London Division of Psychiatry in 2008,

with kind permission of the author. This is the revised second edition of the manual, created in

2018.

Session 6 2nd Edition 3

Plan for today’s session

Recap on communication

p. 4

Introduction to planning for the future

p. 5

Options for care

p. 7

Managing your relative’s physical health

p. 11

Legal issues in care planning

p. 15

Making a plan

p. 17

Stress reduction: Ocean Escape

p. 18

Summary

p. 21

“This is the contents page for you to refer back

to”

Refer to the contents but do not read the full list

For each session:

Encourage the carer to write down what works or key strategies or plans to refer back to.

If content is clearly irrelevant or does not fit, miss it out.

When setting exercises at the end, check that they remember what is in the plan if not explicitly covered in the content.

Session 6 2nd Edition 4

Recap on session 5: Communication

We talked about:

How to express yourself effectively

Practising assertiveness skills

Communicating with someone with thinking and memory problems

Managing stress 4: Guided imagery – meadow and stream

Did you have a chance to complete the communication record?

How did it go?

What went well?

Did you notice any patterns?

What do you think got in the way?

What would make it easier in the

future?

5mins

Discuss their experience completing the Communication Record.

If they have completed one:

o Look at the communication record, how did they find completing it, did they

notice any changes in their communication, how did this affect what they did?

o Look at the different communication strategies they were trying out and ask

them how this went.

If they did not complete it, help the carer to complete it now. Ask them to think back on the

week:

o Problem-solve any difficulties that might have occurred e.g. :

- “There was no time to record in the log. I was too busy.”

- “I didn’t understand what I was supposed to do.”

- “I don’t have any difficulties communicating.”

Identify with them a recent situation where they had either had a difficulty communicating or

when it had gone well and write it in, working through the example and discussing potential

Session 6 2nd Edition 5

Introduction: Planning for the future

In this session, we will discuss planning for your relative’s future. This can be

hard to talk about, but it is important to plan ahead.

Families often find themselves making important decisions at the time of a

crisis. However, this can be more difficult than having thought about it already.

Planning before a crisis can help prepare you. Of course, you can always

change these plans as things change.

We will discuss some of the most common concerns including:

Options for care

Dealing with the physical health of someone with thinking and

memory problems

Legal issues

20mins

The goal is to help you feel more confident and informed when making difficult

decisions about care.

“We will talk through together any questions that you have. There may not always be a clear answer but we can think together about who or what else may be able to help”

Session 6 2nd Edition 6

Let’s talk about any concerns that you have about the future:

What concerns do you have about caring for your relative in the future?

Have you discussed these concerns and how you plan to handle them?

If yes, what decisions have you made?

If no, who would you want to include when discussing these?

If carer can’t think of any concerns, prompt: “Some people worry about the

future if things become more difficult, for example, if they become ill or the

relative’s problems get worse. Are these things that worry you?”

Session 6 2nd Edition 7

Options for care

Let’s consider your current situation and how this is going:

What help does your relative receive from family, friends, or the local community?

What other support do they receive from NHS, social services, or voluntary

services?

“We will now discuss options available for caring

for someone with thinking and memory problems,

and the advantages and disadvantages of each

choice. We know that what is available varies

greatly from place to place, but this is a general

overview of the sorts of options available.

Some of this may not feel relevant to you and

your relative now, but it is information that you

can keep and look back at in the future.”

Briefly talk through what they are receiving currently

and how this is going.

Go through the types of help the carer has

mentioned in the last two questions and fill in the

advantages and disadvantages in the table on

the next page.

Use Descriptions: Options for Care section on the

following pages to add to participants’ answers to

the previous questions.

If they are already very aware of an option or

happy with a service do not repeat it – just fill in

gaps based on what they know/use.

The aim is to provide them with understanding of

different options – If they are unsure or decline a

service go over the section so they are fully

aware of what is on offer.

“Now we are going to talk

through the different options for

care (some of which you may

have already mentioned) and

talk through the advantages and

disadvantages. We have

provided more information on

care options on the following

pages.”

Session 6 2nd Edition 8

Care options

Advantages

Disadvantages

Use information from the opposite page (page 9).

“Most people don’t want

their relative in a care home

but sometimes it is the

safest option”.

Session 6 2nd Edition 9

Family and friends

Health care

Home care

Telecare / assistive technology

Day centres and clubs

Respite care

Extra-care sheltered /assisted living

Care homes

Session 6 2nd Edition 10

Summary of care options

Health care options

Social care options

Specialist health services

Specialist health services for Parkinson’s, Lewy-body disease and associated

thinking and memory problems include memory clinics or other services run

by neurologists, psychiatrists or geriatricians.

If your relative has been seen and discharged from any of these specialist

services, the GP can re-refer if more advice is needed in the future.

Your relative will continue using their usual services for other health issues.

Home care services

These provide different levels of care, from simply giving reminders to care-

workers supporting bathing, dressing cooking and eating based on what is

needed.

Home carers can support someone to take medication if in a blister pack.

Home carers are trained and aim to provide care safely and effectively while

safeguarding the person’s dignity.

Telecare /assistive technology

This is an electronic monitoring and support system provided through social

services or privately to help people remain independent at home.

This could be helpful if your relative is at risk of falling, leaves the gas or

water on, or if you are concerned about them leaving the house alone or

forgets medication.

There is a wide range of options including portable alarms and sensors.

Session 6 2nd Edition 11

Social care options continued…

Residential care options

Respite care

This gives carers the opportunity to take a break.

Residential respite is when your relative stays in a care home or hospital.

At home respite is where someone stays with your relative at home or

takes them out somewhere whilst you get a break.

Extra-care sheltered housing

This enables people to live in their own flat but with added support and

reassurance that help is at hand.

24-hour care

A residential home can offer 24 hour assistance with personal care.

A nursing home can provide specialist nursing.

Ask if they have

any questions

about care options

available. Talk

about any

concerns they

have.

If they ask a

question you can’t

answer, tell them

you will try and find

the answer and

ring them or tell

them next time.

You won’t be able

to answer

questions specific

to the person they

care for, but you

can suggest to

them who can.

We have included

some sheets,

produced by our

team which you

may find helpful.

Day centres and clubs

Some of these are for older people and some are for people with thinking and

memory problems.

They help people stay socially, physically and mentally active e.g. they may

include groups like exercise, cognitive stimulation or music.

Sometimes can help with transport.

They can give carers a break.

Decisions about care are personal and complicated. We have included

additional fact sheets at the end of this session that give comments from

family members who have made these decisions.

Session 6 2nd Edition 12

Managing your relative’s physical health

As people age, they are more likely to experience physical health problems.

People with memory problems often need particular help to look after their

physical health. This support can include:

o Reminding them about medical appointments

o Attending appointments with them

o Helping them to make decisions about medical care

o Giving your opinion or advice, or making decisions on their behalf.

Pain management

“As a carer you may be asked whether you think your relative should have

an operation or receive certain treatments.

If you are asked to make decisions like this, you will be given information

about the advantages and disadvantages of any treatment.”

“Now we will move on to

talk about your relative’s

physical health and pain

management. Again, we

have included fact sheets

that give comments and

advice from family

members who have made

decisions around their

relative’s health.”

People with thinking and memory problems often make (or contribute to)

decisions about their own health.

You can discuss these issues with friends, family members and healthcare

professionals to help you make a decision.

It can be helpful to discuss these issues with your relative in the early stages

of their illness so you know what they want.

Session 6 2nd Edition 13

People with thinking and memory problems may be unable to tell you they are

in pain.

You may notice changes in their behaviour, they may be irritable, distressed

or not seem themselves.

Usually pain can be managed through using the right medication and in other

ways like relaxation massage and good nursing care.

Consider the compromises you and your relative are willing to make for pain

management. Some painkillers can make people drowsy: some would rather

feel drowsy and be in less pain, others would not.

Let’s think of three things that you can do to find out if your relative is in pain:

1.

2.

3.

What if something happens to me?

“People with Parkinson’s

and Lewy-body disease

can have painful

symptoms and/or become

physically unwell.”

Ask them if they are in pain (even if they cannot say , they may show you)

Touch them gently in places that they may be in pain – see their response

Be observant – watch, notice if they are groaning, crying, tensing, especially when touched

Give them pain medication e.g. paracetamol and see if this reduces agitation

If you are unsure check with a medical professional

Don’t be afraid to tell professionals when you think your relative is in pain.

You probably know them best.

Session 6 2nd Edition 14

If you suddenly could not provide care (perhaps because you were taken ill) and

there was no plan, Social Services would arrange any necessary emergency

care.

Some people make a plan in case something happens to them, and they can no

longer provide care for their relative.

You can discuss with your family what would happen to your relative, so that you

can make a decision together for this eventuality.

The Carers Emergency Card Scheme operates in most areas. The person

caring for their relative has a card, and in emergencies they (or someone with

them) can call the 24-hour helpline, who will make the agreed arrangements.

“Details of where to find out about the scheme are in the factsheets

provided with this session”

Session 6 2nd Edition 15

Decisions for the future

Planning for a time when a person with thinking

and memory problems cannot make their own

decisions about their care is difficult.

Have you thought about or discussed similar issues?

If you did, how did this go? Was it helpful?

Did you identify with Jasmine or Hannah?

Example

83-year-old Miriam has had Parkinson’s for many years. She has two daughters, Jasmine and Hannah. Miriam’s doctor told Jasmine that Miriam has thinking and memory problems, which are likely to get worse. Jasmine decides it’s time to talk with her sister, Hannah, about future decisions for their Mum.

Jasmine: I saw Mum’s doctor last week and he told me that Mum’s thinking and memory abilities will probably get worse.

Hannah: You know, doctors aren’t always right. I don’t think you should worry.

Jasmine: But the doctor said we will need to make some decisions pretty soon. It would make me feel better if we could discuss this.

Hannah: I don’t think there is anything to talk about. We can handle things as they come up.

Jasmine: I’d prefer to discuss it now. I think that if we wait until the last minute, it will be too late. I know it’s not easy, but ignoring it won’t make it go away.

“Let’s read the following conversation between

two sisters whose mother has advanced

Parkinson’s” Suggest the carer reads Jasmine

in the script.

Session 6 2nd Edition 16

Legal issues in care planning

What is mental capacity?

In law, people must be able to understand enough to

make an informed decision. If someone cannot, they

are said to lack the mental capacity to make that

decision.

One reason to set up a Lasting Power of Attorney, is

so that if someone with thinking and memory

problems is not able to make an important decision in

the future, they have already chosen someone who

can make that decision for them.

“In this third section, we will introduce some

legal issues that may come up in the future.

Please tell me if you already know of, or have

dealt with, these issues, and we can move on.”

Lasting Power of Attorney (LPA)

Anyone who still has capacity can complete legal documents giving another person (who is then called the attorney) the authority to act on their behalf.

People with thinking and memory problems usually appoint a family member or close friend as their attorney

There are two types of Lasting Power of Attorney (LPA):

o Property and Financial Affairs LPA: Gives the attorney the power to make

decisions about financial and property matters, such as managing a bank

account and paying bills.

o Health and Welfare LPA: Gives the attorney the power to make decisions about health and personal welfare, such as day-to-day care, medical treatment, or where the person should live.

A Health and Welfare LPA only takes effect when someone lacks capacity to make decisions. A Property and Financial Affairs LPA can take effect immediately after it is registered, even someone still has capacity, unless they specify otherwise.

Be aware: LPAs replaced enduring power of attorney in October 2007 Enduring power of

attorney (EPA) completed before this date are still valid. Any existing EPA only applies to

finance and property matters, so even if someone already has one, they can also make an

additional LPA for personal welfare decisions under the Act. Ask the carer if they have ever

considered a power of attorney. If they would like more information, you can give them a fact

sheet. Encourage them to think about Power of Attorney.

Session 6 2nd Edition 17

Advance decisions

Many people think about how and where they would like to be cared for if they became very unwell in the future. For example, whether they would prefer to remain at home, or be in a hospital or a nursing home and what sort of treatment they want or don’t want.

Discussing this with family and friends can be difficult. Some people with thinking and memory problems and their families find it helpful to have these discussions, while others prefer not to.

It can be very difficult to know how someone will feel in the future or what will happen.

The Mental Capacity Act allows anyone with capacity to make an Advance Directive, specifying particular treatments they do not want, should they lack mental capacity in the future.

If they do not have capacity and you are their attorney, you can make an advance care plan. The advance decision will only be used if the person making it is not capable of deciding at the time whether the treatment is needed.

Tips for planning for the future

1. GATHER the information you need to make informed choices as early as you can. If possible discuss with the person you care for (or consider what they may have wanted):

How do they want to be treated if they become very ill or at the end of their life?

Are there treatments that they want to receive or refuse?

What are they afraid might happen if they can’t make decisions?

Do they have any particular concerns or fears about medical treatments?

2. TALK with your family, friends and doctor about decisions that are important to you and your relative.

3. PREPARE and sign LPA and advance directives or care plans that accurately reflect decisions.

4. INFORM the doctor about the discussion and share copies of your advance decisions

If your relative cannot talk about these issues, think what they might have

said in the past and consider their values and what was important to them.

Session 6 2nd Edition 18

Making a plan

Session 6 2nd Edition 19

Identify a possible stressful situation or difficult decision that may occur over the next few months

What information from this session might help?

What further information may be useful?

Session 6 2nd Edition 20

Managing Stress 6:

Guided Imagery – Ocean Escape

Stress Rating Before Exercise

First, please rate your level of stress or tension right now, before we practise the

Guided Imagery exercise.

On a scale of 1 to 5, how would you rate your tension? _____

10mins

“Now we are going to try a new stress reduction technique, last week we learnt meditation. This week we will practise another guided imagery- ocean escape exercise.

First, let’s think about the meditation. Did you get a chance to try it out this week?

If you gave it a go, how did you find it? When did you use it? What effect did it have on how you felt?

If you did not get a chance to try it, what got in the way? Please try and carry on practising the meditation.”

5 = Terribly tense 4 = Really tense 3 = Moderately tense 2 = Slightly tense 1 = Not at all tense

Session 6 2nd Edition 21

Guided Imagery- Ocean Escape

We are about to begin the guided relaxation imagery exercise. Soon, I will be describing a relaxing scene for you. But first of all, make sure you get yourself into a comfortable position in your chair, with your arms by your side.

Close your eyes, and take in a deep signal breath, holding it for a few moments... and then let go, relaxing as you do so.

Now as I continue talking to you, you can allow a calm relaxed feeling to settle over your body and mind…Let go of any unnecessary tension in your shoulders, arms, and hands.... As your shoulders and arms hang loosely by your side, let all of the tension drain out through the tips of your fingers.

Let the relaxation flow from your shoulders into the back of your neck ... as the tension dissolves and melts away... relaxing your neck and scalp... and also your face, including your mouth, tongue, and jaw.

Let the relaxation flow down the rest of your body... your chest... abdomen... and back.

Feel all the muscles of your body becoming loose and relaxed. Letting the relaxing feelings flow into your legs, ankles, and feet. Just allow your entire body to become loose, heavy, and relaxed. And now... picture yourself somewhere by the ocean.

Just project yourself to any relaxing place along the ocean... perhaps a place you have been to or a place you would like to go... It may be a sandy beach or a rocky beach... you may be on a pier or even on a cliff, overlooking the ocean... any place you choose is fine..

Look around... what do you see? Can you see it clearly in your mind? ... Do you notice the vastness of the ocean... stretching out as far as you can see? Perhaps you see a dolphin or whale swimming by...Now inhale deeply, smelling the fresh sea air.... Feel the warmth of the sun,... the cool breeze. How peaceful and relaxing it is...

And now listen more closely to the sounds... especially the sound of the waves. Pay close attention to the sound of the waves and notice how soothing and relaxing the sound is...as you hear the waves roll in... and out again... In... and out...the constant rhythm of the waves... the ebb... and flow... And each time the waves flow in... and out, you find yourself becoming more deeply relaxed... deeper... and deeper... as your muscles go loose... and limp... and the tranquility of this place surrounds you. [Long pause]

And now spend a few minutes doing whatever you would like. You may just want to lie on the sand and soak up the sun...

“Now I am going to talk you through the guided imagery exercise…”

Session 6 2nd Edition 22

you may want to walk along the beach... or swim in the cool water... perhaps you would like to do some fishing... go sailing...Whatever you would like to do at the ocean is okay... but no matter what you do, just continue being aware of this relaxation...

[Allow participants a few moments to enjoy this imagery]. And now, I will bring you back slowly from this relaxation by counting backwards from 3 to 1. When I get to 1, you’ll be alert, refreshed, and comfortable.

Okay,

“3” much more alert;

“2” feeling refreshed and comfortable, and

“1” as you open your eyes and return your awareness to the room you are in.

Tension Rating After Exercise

How would you rate your tension level now, after practising the Guided Imagery

exercise?

Q! Now, please rate your tension or stress level from 1 to 5 _____

5 = Terribly tense 4 = Really tense 3 = Moderately tense 2 = Slightly tense 1 = Not at all tense

Discuss: • Did your level of tension change? • What was this experience like for you? • Can you think of specific times when this might have helped?

Session 6 2nd Edition 23

Summary

Today, we have talked about:

Planning for the future

Options for care

Managing your relative’s physical health

Legal issues in care planning

Stress reduction technique: Guided imagery – Ocean escape

“Thinking about what we have

discussed, is there any

information from today’s

session that you would want

to share with someone else

(e.g. a family member, a

friend or a neighbour) ”.

Session 6 2nd Edition 24

FOR NEXT WEEK: Putting it into practice

Stress reduction – Guided imagery - Ocean escape:

Try to practise this at least once a day and notice how it feels.

Planning for the future:

Consider the questions on page 17 and read through the factsheets

included at the end. Make a note of any questions and we can discuss

these next time.

Optional exercises:

Please continue to use the behaviour and thought records if this is

something that you have found useful in previous weeks.

START: Putting it into Practice

When will you have an opportunity to do this?

What might get in the way?

What might make it easier?

If you only have time for one exercise, please read over the information

from this session and have a look at the CHOICE factsheets.

Session 6 2nd Edition 25

Thought Record

What was

happening?

What were you

thinking?

How did you feel?

An alternative

response would be…

How do you feel

now?

Session 6 2nd Edition 26

Extra Thought Record

What was happening?

What were you

thinking?

How did you feel?

An alternative

response would be…

How do you feel

now?

Session 6 2nd Edition 27

Behaviour Record Please use these pages to write down the things your relative does (or that you do) and the strategies that you try out.

Day Morning/Afternoon/

Night

Who was

there?

Trigger Behaviour Reaction What strategy did you

try?

What happened?

Session 6 2nd Edition 28

Extra Behaviour Record

Session 6 2nd Edition 29

Day Morning/Afternoon/

Night

Who was

there?

Trigger Behaviour Reaction What strategy did you

try?

What happened?

Session 6 2nd Edition 30

Notes

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