Supporting someone with thinking and memory difficulties

ABOUT THIS POST
​This post is aimed at the key supporters of a person who has been experiencing some difficulties with thinking and memory.  Most carers or supporters are typically a spouse, partner, parent or adult child, though you may also be a close friend.

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It covers:

• Adjustment to the changes in your relative or friend
• Common day to day challenges you may experience
• How you can help yourself 
• When you should seek further help at support 
• Tips for managing 'carer' stress

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Adjusting to the changes in your relative or friend

​As a close relative, it is likely that you were among the first to notice thinking and memory difficulties in your relative or friend. You may have been worried for some time (sometimes several years) before discussing your concern with another relative and/ or other health professionals.

​When a doctor confirms your suspicions that your relative is experiencing some 'real' memory and thinking difficulties, you may feel one or a combination of the following:

• ​A sense of relief

​You are not imagining things. You may feel happy to locate some new information on how to best help your relative manage their difficulties.  You may be hopeful that some medical treatments might be available.

• Confusion, worry and a loss of certainty

​You may be wondering what the news means.  You may feel very anxious and uncertain about what to expect.  

• Not 100% convinced

​In some cases, you may feel that the doctor has exaggerated the problem or simply 'got it wrong'.  You may think that stress, depression or illness is the 'real' reason for many of the difficulties that your relative or friend is experiencing.

• A sense of sadness or loss

​You may feel sad about the changes that your relative is experiencing.  You may also be feeling sad about the way that your relationship with your relative is changing. For example, you don't seem to talk as much as you used to.

• Guilt

​You may feel guilty, particularly if you have been getting frustrated with your relative from time to time.  You may also feel guilty and worry about how you will cope.

​Common day-to-day challenges

​The nature of the concerns you experience will depend on the nature of your relative's memory and thinking difficulties.  Some common stressors include:

• Repetitive questioning or forgetfulness

​You may find it frustrating if your relative is very forgetful. You may need to be the person who acts as the 'memory bank' for much of the time.

• Indecisiveness

​Your relative may be more indecisive and dependent on you to make decisions (e.g., about medical care).  This may be upsetting and you may feel a little resentful about taking on this role; you may miss your relative's more independent style.

• Increased defensiveness

​Your relative may be very defensive about their difficulties.  They might deny them or become angry if someone complains that they have a problem. You may be unsure about how to cope with this as you may worry that they will become depressed if they start acknowledging their problems.

• Reduced initiation of activities

​You may have noticed that your relative or friend no longer initiates housework, social activities or financial tasks that way they used to.  You may find yourself prompting your relative or taking over some of their previous roles.  You may worry that their difficulties will worsen further if they do not remain active.

​Any pre-existing problems may make it even harder to cope with the new situation.  These can include:

• ​Multiple responsibilities and busy lifestyles

If you are already coping with other responsibilities - with work, children or partners - then dealing with newly emerging difficulties can be especially hard.  You may find it difficult to balance all the competing demands and you may find yourself becoming very stressed or anxious, with too much to do.
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• ​Pre-existing medical/ physical problems 

In some cases, either you or your relative  may already be coping with other medical problems prior to developing difficulties with thinking or memory.  These difficulties may already be stressful and difficult for you both to manage.

• Relationship problems

Any relationship problem with your relative or friend that existed prior to the development of thinking and memory difficulties may make things very difficult.  You may feel as if your relative is sometimes intentionally doing things to upset you.  You may feel ambivalent about doing more things to help your relative or friend.

• Conflict within the family

​Sometimes there is disagreement within a family about how to best help the person with thinking and memory difficulties.  This can be difficult for you, particularly when other family members or friends live a long way away and may not be aware of all the changes that have occurred.

​When you should seek help

​It is important that professionals and community services are available to assist you to cope with the challenges of supporting your relative.

​You should seek help if you:

• ​Find it difficult to think of ideas on how best to support your relative or to adjust to the changes in your lives
• Are feeling overwhelmed by the stressors in your life
• Feel very isolated and find it difficult to talk to friends or family about your relative's thinking and memory difficulties
• Experience very low mood (e.g., feeling unhappy, being irritable or having difficulty sleeping) or anxiety (e.g., constant worrying and having difficulty relaxing) and not getting any better over time.

​Several different types of professional may be able to help you.  A useful first point of call is often your family doctor (GP) who can refer you to a range of services that can be of use. These could include:

• ​Support groups for people who, like you, are looking after someone with thinking and memory difficulties.
• Activity groups your relative may enjoy that are run in your local community.  These could include council run activity groups. Participating in more activities may assist your relative to be more active and encourage you to take some time out.
• Seeing a psychologist, psychiatrist, counsellor or other mental health professional on a one-on-one basis may be of assistance.

​EDUCATE other family members about the difficulties your relative is experiencing.  Try to keep communication open and avoid conflict. Ask them for support and assistance/

SHARE your concerns with friends in your local community clubs or church group. Try to be sensitive to your relative's feelings on this issue.  If there are some people who your relative would be reluctant to tell about his/ her problems try to respect his/ her wishes.  If necessary, seek out people who are not related to or involved with your relative.

TIPS FOR MANAGING 'CARER' STRESS

Try to stay focused on a positive problem solving approach BUT don't set unrealistic expectations

• Don't be too hard on yourself if occasionally you get frustrated with your relative due to the changes caused by their thinking and memory difficulties.  You are human.  If you find yourself having outbursts or getting angry on a daily basis - seek help.  Consider seeing a psychologist or counsellor or talk to a good friend.
• Don't expect to provide support for your relative all the time.  Instead, remember that you need help too.  It is important to take time out and to continue spending time with people who are supportive and positive in your life.

Learn to take time out and use relaxation techniques

• Both you and your relative need to take time out of your day to relax and think.  For example, spend time in the garden.
• Consider taking up activities such as Yoga, Pilates or Tai chi, either together or separately 
• Consider learning some new relaxation techniques.  You can read about them from books or CDs, attend some local classes or learn from a professional such as a psychologist

Take care of yourself 

• Get regular exercise, eat healthy food and maintain a healthy weight.​
• Try to do more things that you enjoy (such as socialising, walking on the beach or playing music) and fewer of things you don't.
• Seek out social support

Acknowledgements: This is an extract from the MAXCOG series of handouts that were developed by myself for a project that was funded by ‘the Wicking Trust’ whilst working as a Research Fellow at the Lincoln Centre for Research on Ageing at La Trobe University. Click here if you would like to view full set of handouts.
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