• Call your family member the day before as a reminder.
• Together with your relative, prepare a list of questions that you want to ask the doctor, or issues that you want to discuss. Some very organised people like to assemble a ‘medical history’ folder in which they keep all medical reports and results.
• Ask the doctor to write down any instructions, or write notes yourself during the consultation.
A hospital admission requires extra support, especially an unplanned, emergency admission.
Last week I went to visit a relative in hospital a few days after her operation. She has early dementia and has been living with family for the past six months. She had a sudden health problem that required emergency surgery. She could not recall why she was in hospital, how she got there, how long she had been there, which hospital she was in or what day it was. She kept asking repeatedly about this information. She seemed unsettled and anxious about not knowing these details. She wanted to sit up, but she didn’t know how to make the back of her bed move with the special hand-held controller. She wanted to watch TV, but again, she had no idea how to turn the TV on. She was clearly feeling uncomfortable about not being able to perform these relatively simple tasks independently.
In this case, a few simple changes allowed my relative to feel a greater sense of control. We brought in a clock with the day and date on it, and put this on her over-bed table where she could see it. We gave her a brightly coloured notebook with a pen attached to it with hat elastic, so that she wouldn’t lose or drop the pen. In the notebook, we wrote down the name and address of the hospital, the date that she was admitted and the details of her operation. We added the name of her doctor and important contact phone numbers. We wrote down what the doctors had told her about what she was allowed to eat. We labelled the TV and bed controllers and put them where she could easily find them. We even put labels on the vases of flowers around the room, so she knew who had given them to her.
My relative wrote in her notebook each day—who had visited her, instructions from the nurses, and symptoms that she wanted to tell her doctor about. Her initial confusion settled and by the end of her week in hospital she was once again beating us all at the card games she loves so much!
Anne
When you spend time in a rehabilitation setting, you meet several health professionals. If you have a memory illness, it is difficult to remember who everyone is, and what their names are.
When Dad was staying at the rehabilitation centre, we asked each member of his treating team if we could take a photo of them to hang on the wall in his room. We stuck all the photos on a large piece of paper, and wrote each person’s name and their role in the rehab team under each photo. It helped us to remember the information, too!
Jessica, 60
Looking after yourself
When you are supporting someone who has memory difficulties, you need to look after yourself, too. Share the load as much as you can, and work on developing a support team. Keep other family members and close friends informed—and don’t be afraid to ask them to provide assistance. Many people want to help, but don’t know how best to do this. Let people know what they can do to support you.
Stan’s golf friends have been incredibly helpful. He was about to give up golf. He said he wasn’t enjoying it anymore because he couldn’t remember where he hit the ball and he had difficulty keeping track of his shots for scoring. Together, we spoke to his friends and let them know that he was having trouble with his memory. Not only are they now helping him with scoring, they have arranged a roster and he is now being driven to and from golf each week. This has made a huge difference for me. I know that Stan is enjoying himself when he is there, and I get to have some precious time to myself each week.
Lesley, 74
Remember that your relative or friend with memory difficulties can help out with many things, and they will feel valued if they can give something back to you.
When I met Bruno who has early dementia, and his wife, Denise, I was impressed by the way that they supported and valued each other. Denise had hip pain after a hip replacement and was due to have her other hip operated on soon. Bruno said, ‘I do the lifting and she does the thinking.’ Bruno assists Denise physically, and she supports Bruno with his memory.
Anne
Even though Mum’s memory is a real problem now, she is still there for me, as she always has been. Whenever she is at our house, she does all my ironing, and she spends time with the kids so that I can get some other things done.
Bronwyn, 46
Build in some regular time for you. Even if it’s just for five minutes, do something that you enjoy each day. Stay connected with the people who are important to you. Look after your health, eat well and exercise regularly. When you are supporting someone who has a memory illness, there is often a sense of grief and loss, as a part of that person has changed. You have had to adjust your expectations of that person, and take on a different role in your relationship with them. These changes can leave you feeling sad, lonely, stressed, anxious and depressed. At times you can feel guilty if you have lost your patience with your relative or friend who has memory difficulties. Make time to talk things over with a trusted friend or family member on a regular basis. Consider talking to a health professional, such as a psychologist, doctor or counsellor from a dementia support organisation. Many people appreciate attending a group where they can talk with others who are supporting someone with a memory illness. See the ‘Resources’ section at the end of this book for a list of helpful organisations. Remember that you need to nurture yourself to be able to nurture someone else.
I look forward to my morning walk around our retirement village with my friend Judy. We’ve always been there for each other, and I feel refreshed and ready to start the day when I walk back into our house after talking things through with Judy.
Merna, 82
I spent some time talking to Ken and his wife, Margot, who has Alzheimer’s disease. They described the frustration, fatigue and grief that they had experienced related to Margot’s dementia. At the same time, they conveyed a sense of continued joy in their relationship, and they said it has been important for them to remember that ‘each day is a new day’.
Anne
Key points CHANGES IN SOMEONE ELSE’S MEMORY
• If you are concerned about a relative or friend’s memory, first check if age-related changes or health and lifestyle factors could be influencing their memory in an adverse way, and seek advice or treatment for these factors if you think it is necessary.
• If you are concerned about dementia, read Chapter 8. You may want to suggest a visit to their doctor and possible referral to a specialist.
• If your relative or friend has a memory illness such as dementia, provide a supportive living environment, emphasising routine and activities that draw on the person’s continued strengths.
• Develop a range of memory strategies to promote confidence and independence.
• Provide extra support when there are changes to routine or additional physical or mental health issues.
• Look after yourself, and ask friends, family and health professionals to be part of your support team.
CHAPTER 10
Towards a memory-wise community
We live in a constantly changing society. There is an ever-increasing amount of information available to us. Life is busy; the pace is fast. There is more to do and see—and more to remember.
Our physical environment changes. New freeways and train lines are created, so we have to learn new routes to travel. New shopping centres are built, or old ones are modernised. The shop that you went to last week has moved, or the supermarket has rearranged its aisles.
We move from one work environment to another more often, meeting new staff and adapting to modified procedures. Many older people move from their homes into alternative accommodation facilities. All this moving means there is more to learn, in a never-ending process of maki
ng the unfamiliar familiar.
We are constantly having new technology thrust upon us. New computer systems and devices, regular updates to online banking software and apps, alterations to the way we connect to the internet and store information, smart TVs, and revamped access to music and media. The way we communicate with each other has changed, with fewer phone calls and more messaging via text and email. We have to remember passwords, PINs, email addresses and longer phone numbers.
There is now less service as we are progressively made to do things that used to be done for us. We shop, book tickets, and access government agencies for benefits and health rebates online. When we go to the airport, we check in our own luggage and print our own boarding passes on devices that seem to be different every time we do this. At some restaurants we order our food on touch screens rather than talking to someone. We are required to adapt to all sorts of new aids to help people with disabilities, and be aware of new names for community and health services, and the municipalities in which we live.
Multiple changes such as these place an unprecedented demand on memory capacity. At work and at home, we are constantly finding we need to keep ‘up to date’, but there never seems to be enough time. Continuing education is in high demand, and has become a major focus of many workplaces. Not so long ago, people were able to consider that by early adulthood they had attained most of what they needed to know about their field of expertise. These days, it seems that knowing everything is impossible.
More people are experiencing changes in their memory
The way that we live can make our memory processes less efficient, and at any age we can experience fluctuations in our memory. Forgetting some information is a normal, adaptive part of memory, but at times we feel that we are forgetting too much information.
It is hard to learn new things when we are bombarded with constant distractions: notifications flashing on our screens, the sounds of personalised ringtones, the pressing need to check our devices for fear of missing out on the latest information. Multi-tasking in an effort to get more done in less time, we are typically surrounded by the noise and sight of people around us in shared spaces.
We do a lot—maybe too much. We work long hours and often spend additional hours commuting to and from work. When we get home, we remain connected to work via our devices. Many of us feel overwhelmed, tired and stressed. It’s hard to focus when you’re worried about something, feeling rushed, or thinking about other things you have to do.
When we’re overloaded it’s easy to slip into unhealthy and ineffective habits, and maybe we don’t take as good care of the workings of our memory—our brain—as we should do. We come home from work exhausted, perhaps drink too much alcohol, and don’t eat or sleep well. We don’t make time for regular exercise, or going to the doctor for routine health checks. We may experience other health issues that can impact negatively on memory, such as pain, depression and anxiety.
Some people develop specific anxiety about memory. They become anxious because of a memory lapse. Then, because they are so conscious of their remembering abilities, they notice every memory lapse that they make, no matter how small. They become more anxious, and often don’t tell anyone about their fear. The increasing anxiety means they are more likely to ‘forget’, due to poor attention. They then notice more memory lapses and, in turn, become more anxious.
In addition to social changes making more demands on the memory abilities of all members of industrialised, technically driven societies, there is a demographic shift: the proportion of older people in our community is increasing. This means there are more people experiencing normal age-related memory inefficiencies, and more people who are living with significant memory difficulties related to memory illnesses, such as dementia.
Many of us work beyond middle age, and the increased demand on memory and frequent distractions inherent in the way we live can exacerbate any memory changes associated with getting older. In the same way, memory difficulties that are related to memory illnesses can be more pronounced when there is an extra load on memory, further impacting upon family members and friends who support people with significant memory loss.
Talk about memory!
With more people in our community experiencing real memory change, it’s surprising that many people do not openly discuss memory. There is increasing media coverage of dementia-related memory loss, often focusing on the latest research for reducing the risk of developing dementia, or potential medical cures. From time to time we hear about people who have extraordinary memory powers, or who develop complex mnemonic techniques and compete in memory championships. Less sensational, although just as intriguing and important to our lives, are the workings of day-today memory—but these are rarely talked about.
A communal fear of memory loss seems to make it a taboo subject. Yet, if there was more discussion about the fluctuations that a lot of us experience in our remembering, then the fear and anxiety surrounding everyday memory fluctuations would lessen. People would realise that many of us experience memory inefficiencies, especially as we get older, and that the occasional memory lapse doesn’t mean you are developing dementia. People would be reassured that they are not ‘the only ones’ to experience fluctuations in their memory, and by talking to others, they might pick up some new ways to manage mild memory changes.
Talking about dementia more openly in our community would help to reduce persisting stigma about memory illnesses. Recent media coverage of well-known individuals who have depression and anxiety has encouraged others to talk about their mental health issues. Putting dementia on the community discussion agenda, and sharing stories about living with significant memory illnesses, would promote more widespread understanding of what it is like to have dementia, and also get us thinking as a community about how we can provide ongoing support for people with dementia—as well as their family members and friends.
Be realistic about memory
We need to stop putting unnecessary expectations on ourselves in terms of our remembering. Our memory processes will not always be 100 per cent perfect, and there are many reasons why. The way that we react to our memory lapses is crucial. We need to be kind to ourselves. There will be times when our memory doesn’t work so well, and we need to use our best strategies to support remembering.
I know now that whenever I get stressed, I lose things, because I’m rushing and I’m not able to focus on where I put things. This year I’ve had a lot of work-related stress, so I decided to take action on my memory. I have attached location tracking devices to the things I keep losing, which has at least got rid of the added stress that my faulty memory was giving me.
Anu, 57
As family members and friends, we need to be realistic about what we expect from the memory abilities of those close to us. If Anu was a relative of yours, you would probably know that she loses things when she gets overloaded and stressed. You could easily get annoyed with her when she is not able to find something—again!—or, you could choose to be patient with her and downplay her forgetfulness, knowing that there is a reason why she has not been able to focus.
As a community, we need to be aware of the considerable individual variation that exists in memory ability. People we associate with could experience intermittent lapses and fluctuations in memory related to health and lifestyle factors, age-related inefficiencies, or significant memory loss related to memory illnesses. We need to accept that there is change in memory abilities around us and, ideally, generate a culture which makes allowances and provides support for this. While older adults in our community may experience minor changes in the speed with which they can encode and retrieve information, we continue to rely on their experience, intuitive problem-solving skill and wisdom. We need to support our elders in the workplace, many of whom provide invaluable leadership to our society.
Pay attention to paying attention
The distractions in our lives are endless. They come both from within us and from things happenin
g around us. Many of our memory lapses are not actual ‘memory’ lapses but, rather, they are lapses in attention, resulting from distraction. The information didn’t get into memory storage because we didn’t pay enough attention to it in the first place.
We need to reduce the distractions that are interfering with our ability to remember. This is hard to do, given the way our community operates. We are less ‘present’ than perhaps we used to be because we spend so much time trying to multi-task. When we are with people, we are often looking at our phones or thinking about the next thing that we need to do, in the midst of our conversation. It is no wonder we forget things that people say to us.
The incessant distraction in our society has led some to the practice of mindfulness in an attempt to regain present-mindedness. Mindfulness training aims to reduce mind wandering and distraction, thus allowing us to fully engage in whatever we are doing. If we can learn to focus on the present, and pay attention to paying attention, then we may recover some of the encoding ability that gets lost to distraction.
If we can process information deeply, and make it meaningful to us, we will have a better chance of recalling that information later on. Creating the mind space to successfully absorb information can be challenging, but there is much to be gained from making a conscious choice to slow down, reduce distractions and pay attention.
Reduce the load on memory
Ideally, our society should be responsive and proactive in enabling us to learn how to adapt to the constantly new situations we find ourselves in. This supportive approach is especially important for middle-aged and older people who may otherwise be ‘left behind’. Positive ageing has become a community issue in many societies, as shown through parliamentary inquiries, provision of access to learning for older people, and the development of special community facilities for retirees in sport, the arts and travel. Older people will enjoy better emotional wellbeing if they can develop and maintain social networks. Their ability to remain independent relies on good recall for rules, timetables and procedures; otherwise their participation in everyday life is restricted.
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