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Angela Caughey - Author of Dealing daily with Dementia

Liam Butler interviews Angela Caughey - Author of Dealing daily with Dementia

11 March 2014


About Angela Caughey

Angela Caughey began writing in the mid-1980s, and is the author of four previous books. For more than 12 years she took care of her husband, who had dementia. She read widely around the subject, but found that none of the books included the practical hints for carers that she and her support group needed. Angela wrote Dealing Daily with Dementia to bring these hints together for the benefit of all carers.

Question One

Dealing Daily with Dementia is an extremely well researched book. What do you think are some of the best strategies in it that care givers might not know?

'How to look after yourself; follow the 'Caregiver's Code'; be aware of Normal/Abnormal memory loss; how to deal with sexual feelings; creating Enduring Powers of Attorney (EPOA. Every adult person should have one); reviewing whether you are cut out to be a carer; identifying and dealing with feelings; making a Life Book; keeping a carer's journal.'

Normal and Abnormal Memory Loss

Normal Memory LossAbnormal Memory Loss
Forgetting where you left your cheque bookForgetting which bank you use
Repeating a story to friend or spouseRepeating the same story over and over on the same day to the same person
Forgetting what you had for breakfast yesterdayForgetting what you had for breakfast 15 minutes ago
Using calendars and lists to remind you of certain thingsForgetting to use calendars and lists and not understanding the use of either of these
Being disorientated for a moment waking up in a strange motel room when travellingGetting lost in your own home where you have lived for years
Sometimes forgetting where you parked the carForgetting that you drove to the shops or that you have a car
Forgetting the details of a holiday 10 years agoForgetting that you went for a trip last week
Worrying that you have memory problemsBecoming unaware and uncaring that you have memory loss

ref: Dealing Daily with Dementia p24

Question Two

Angela, you often relate to the need for people to reach out and seek support when managing dementia. For reserved people this is often difficult. How do you suggest they take the first step and reach out to formal and informal supports?

Approach Alzheimer's and Parkinson's (and possibly other dementia organisations if they exist in the community) who form separate support groups for people with dementia and carers. Both people with dementia and carers benefit from being part of support groups. It is easier to go along with another person. I went the first time with my husband's field officer.'

It is also important to examine your coping skills honestly, for instance by looking through the following 10 statements and choosing between the options in bold that suit your style:

Review how you operate:

1. As a carer, I am strong/anxious.

2. I will, as much as possible, let my charge look after themselves/protect my charge.

3. I will/won't discuss dementia matters with my charge.

4. In communicating with the doctor I will talk openly/censor my reports to maintain my charge's dignity.

5. I will join appropriate organisations/cope by myself (organisations are for others).

6. On my own or when socialising, I eat and drink moderately/to excess.

7. It is important to lower my expectations of my charge and myself/keep standards high.

8. I want to know the course of this disease/take it as it comes.

9. I will manage as a team with my charge /my charge to prevent them becoming a nuisance to me or others.

10. I will see myself caring for my charge in a practical way with love/already veering towards dislike for my charge.

ref: Dealing Daily with Dementia p71

If you have ticked the second option in several statements above, or if you already feel agitated or unsure, you may find being a carer difficult or overwhelming. Your charge may be better off with another family member or a paid full-time carer, or in full-time care, than with you being grumpy or overwrought.

Question Three

Angela, given the early praise for your book, what other health topics would you like to see covered in such a manner in New Zealand?

Depression

Question Four

Angela, after all your experience, what main points stand out about dementia that you would ask everyone to take note of?

'Remember that the 'original' person affected by dementia is still inside. It is just difficult for them to get their thoughts and wishes out. Treat them with respect, and seek education as to how best to do this in tricky situations.

The Carers Code

You, your charge and everybody around you will benefit if you read the Carer's code below, take note, and promise to follow the Code. It applies to any caregiver, not only those looking after dementia patients.

As a caregiver, I must remember to do the following:

1. Take good care of myself and recognise my limits, without feeling I am failing to measure up. This is not selfish. It will enable me to take better care of my charge.

2. Ask for help whenever I think I need it, even though my charge may object.

3. Keep up my own interests and activities, while doing everything that I reasonably can for my charge, just as I would if they were healthy.

4. Realise it is normal to feel anger or depression occasionally, and to express these and other difficult feelings to a support group.

5. Reject any attempts by my charge to manipulate me (consciously or subconsciously) through their anger, guilt, self-pity or depression.

6. Feel entitled to receive consideration - affection, acceptance , forgiveness-for what I do, as long as I am offering these qualities I must make sure that my charge and I give each other hugs, and laugh often.

7. Take pride in what I am accomplishing, including the effort and courage it sometimes takes to cope.

8. Preserve my individuality and right to live my own like in preparation for the time when my charge will need less of my care. I must keep in touch with my friends.

9. Have a support group, and expect to be supported as a caregiver by medical staff and others, just as my charge is. If this is not the case I must go to another doctor.

10. Feel content with myself and what I am doing, even without the direct feedback, acknowledgement or praise.

11. Imagine realistic goals and write them down.

12. Follow all the above. It is easy to give advice, but very difficult to apply it to myself. (See 1 and 3 above.)

ref: Dealing Daily with Dementia p113

Dealing Daily with Dementia

2000+ Practical Hints & Strategies for Carers

by Angela Caughey RRP$40

www.calicopublishing.co.nz/book/dealing-daily-with-dementia

Book review by Liam Butler

Dealing Daily with Dementia is perfectly titled. Angela provides advice that can be used to help a person with dementia and their primary caregiver to maximise their health and well-being.

Thanks to Angela's robust research and writing style, Dealing Daily with Dementia is an easy to read, easy to follow guide book. The numerous first-hand accounts from caregivers and people with dementia are frank, heartfelt and always linked to strategies to how to manage the issue in question. At all times Angela focuses on the dignity and wellbeing of the person of dementia and their primary caregiver.

Dealing Daily with Dementia covers many topics including incontinence, socialising, finances, liaising with health professionals, residential care and sexuality. Each topic is covered using plain language and includes both what caregivers have found works best and what health professionals' advice.

Angela has been able to condense a lot of wisdom in this book. The book flows and is written in a logical sequence. The comprehensive index and selected bibliography makes it easy for people to research questions particular to their current situation and plan for the future.

Dealing Daily with Dementia is the most useful book for carers and their families that I ever have read from a New Zealand author on any chronic health topic. Angela certainly deserves high praise for this meritorious publication. And I am in no doubt she will receive praise for her efforts when she meets grateful care givers who are eager to tell her how using the practical hints in Dealing Daily with Dementia has improved their lives.

All royalties from this books sale will be paid to Alzheimer's and Parkinson's charities.


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