[Session 2: version 2]

START: Strategies for Relatives

Session 6:

Planning for the future

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

Session 6 2nd Edition 4

Recap on session 5: Communication

We talked about:

How to express yourself effectively

Practicing assertiveness skills

Communicating with someone with 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?

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 dementia

Legal issues

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

decisions about care.

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?

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?

Session 6 2nd Edition 8

Care options

Advantages

Disadvantages

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 9

Summary of care options

Health care options

Social care options

Specialist dementia health services

Specialist health services for dementia include memory clinics or other

dementia services run by psychiatrists, neurologists or geriatricians.

If your relative has been seen and discharged from 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 10

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.

Day centres and clubs

Some of these are for older people and some are for people with dementia.

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 11

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.

People with dementia 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 12

Pain management

People with dementia 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 pain killers 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.

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

You probably know them best.

Session 6 2nd Edition 13

What if something happens to me?

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.

Session 6 2nd Edition 14

Decisions for the future

Planning for a time when a person with 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 memory problems for many years. She has two daughters, Jasmine and Hannah. Miriam’s doctor told Jasmine that Miriam’s memory is 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 memory 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.

Session 6 2nd Edition 15

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 dementia is not able to make

an important decision in the future, they have already

chosen someone who can make that decision for

them.

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 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.

Session 6 2nd Edition 16

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 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 17

Making a plan

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 18

Managing Stress 6:

Guided Imagery – Ocean Escape

Stress Rating Before Exercise

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

Guided Imagery exercise.

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

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

Session 6 2nd Edition 19

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...

Session 6 2nd Edition 20

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 practicing 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

Session 6 2nd Edition 21

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

Session 6 2nd Edition 22

FOR NEXT WEEK: Putting it into practice

Stress reduction – Guided imagery - Ocean escape:

Try to practice 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 23

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 24

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 25

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 26

Extra Behaviour Record

Day Morning/Afternoon/

Night

Who was

there?

Trigger Behaviour Reaction What strategy did you

try?

What happened?

Session 6 2nd Edition 27

Notes

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