Life with MS as you get older

Of the 2.8 million people living with MS across the world, about 1 in every 10 is at least 65 years old. Most of these older people with MS have lived with MS for 20 years or more.

As we get older our bodies change, which can bring new challenges for living with MS. MS symptoms tend to progress over the years and we become more likely to develop additional health conditions.

The good news is that getting older can bring the experience and wisdom to better manage MS.
In a study, many older adults with MS said they had gained confidence in managing their condition and had a better quality of life now than previously. In another study, Canadians with MS in their 80s reported less fatigue and stress than those in their 60s.

On this page you can find information about how people with MS can maximise their physical and cognitive abilities, manage MS well, and get the most out of life as they get older.

‘The most important thing of all is that, regardless of MS, we can enjoy our lives, with dignity, with quality, and being as happy as we can be.’

Luis from Spain, Diagnosed in 1997

Find out more about living well with MS as you age below. The content below has been adapted from MSIF’s guide ‘Living well with MS as you grow older’. Download the full resource here.

Managing your health as you get older

Our body and brain health changes over time. Some of these changes may overlap with MS symptoms. It also becomes increasingly likely that you’ll develop additional health conditions, sometimes called ‘co-morbidities’. You can learn more about how age, MS and other health conditions can affect your health here.

To live well with MS as you get older, it’s important to stay on top of your overall health and wellbeing. Here are four simple steps that people with MS can take to manage their health as they age;

  1. being alert to new symptoms, having screening tests,
  2. having screening tests,
  3. following general health advice,
  4. keeping physically active.

Find out more about these four steps to managing health as you grow older.

Take a look at these tips and more for looking after your health and wellbeing in the graphic below.

Graphic reads: 'TIPS looking after your health & wellbeing Note down changes to your physical and mental health in a diary or app so you can discuss them with your doctor or nurse. Be open to hearing from friends, family and carers if they notice a gradual change in your health that you might have overlooked. Have a set routine for taking medications. A pill box, calendar or reminders on your smartphone may help. If you’re struggling to stay motivated or to fit your health needs into your daily life, ask your doctor or nurse what programmes or specialist support is available to you. Take up invitations for health screening. If you’re unsure what’s available, contact your family doctor’s clinic or insurer to ask.' Image: graphic characters of an older man and woman going hiking.

Self-management

Self-management is a set of approaches to manage (and improve) physical health, mental health and overall wellbeing. It is a valuable skill that can improve quality of life, help people affected by MS to cope with symptoms and improve confidence and positivity about managing MS throughout ageing. It is a skill that can help people feel more in control of their lives and futures. Many people get better at self-management as they get older.

Image of Neelima from India, diagnosed in 2007 dancing. Quote reads: 'Age is just a number. It doesn't define me and my MS. I believe living well with MS is possible with self-management'
Picture of Marie from Canada, diagnosed in 1996, smiling whilst outside walking with an assistive walker. Quote reads: 'Be proactive in planning your future needs.'

The ingredients of successful self-management can be broken down into six skills; problem solving, decision making, using resources, communicating with healthcare professionals, taking action and self-tailoring.

Text reads: Six skills of self-management 01 Problem solving 03 Using resources 05 Taking action 02 Decision making 04 Communicating with healthcare professionals 06 Self-tailoring

Many people with MS feel they’ve become more able to manage their condition and symptoms as they’ve got older. In studies of living well with MS at older ages, some people explained that it took them almost 10 years to understand their MS. Once confident in how to predict and manage their MS symptoms, they were able to cope better and focus on the parts of their lives that were important to them.

Self-management is a continual learning process. To live well with MS as you get older, you’ll need to find ways to manage varying symptoms and challenges. By adapting your routines, you can reduce the impact of your MS and do the everyday things that matter to you.

Find out more about self-management and learn about each of these skills.

Independence and identity

As we get older we may become more dependent on support from others. Loosing independence is a common concern for people with MS as they get older, this can affect one’s sense of independence and self. However, accepting help often means you can get more from life, not less.

There are many ways to protect your independence and boost your self-esteem, whilst ensuring you get the support you need as you grow older with MS.

This may include things such as planning ahead, adapting your home, using assistive devices and considering your options for local support. Find these tips and more in the graphic below.

Text reads: TIPS protecting your independence and identity Plan ahead. Think about what help you might need in the future. Make realistic plans with others about how you’ll get this support. Planning will help you to feel more in control and less threatened by what the future may bring. Research professional care services. Look into the local options for professional help. Even if your partner, friends or family usually provide your help, it is good to know which professional services you could call on in an emergency or if they would like a break. Adapt your home. Simple changes to your home could make it easier to do some daily tasks independently. Examples are installing handrails on stairs and in bathrooms, using electric devices (such as an electric toothbrush or can opener), and chairs or stools for the shower or gardening. Use assistive devices. A wide range of devices are available that could help you to stay mobile. These include leg braces, canes, walkers, wheelchairs and scooters, and shoe inserts. Ask your doctor what is suitable for you. Connect with others. Conversations with others can help you to identify your feelings, needs and what’s important to you. Being part of groups – including MS groups – can also strengthen your sense of identity and self. Do things that bring you joy. Identify the things you find most rewarding, enjoyable and that maintain your sense of identity. Work on relationships with caregivers. If your partner, family member or friend is caring for you, this could affect your relationship. Talk openly about each of your feelings. Doing activities you enjoy together can help you to protect your relationship. Image is two women cooking.

Learn more about accessing more help, and protecting your independence and identity as you get older.

‘We will all get old, but it may be more of a challenge for those of us living with MS. Don’t be too hard on yourself and accept your limitations. Seek out support to help with activities that you can no longer do, or modify the activity. Every day, my husband and I walk and roll around the block with our dog, we have done so for the past two years.’

Marie from Canada, Diagnosed in 1966

Cognitive health

MS and growing older can both affect your brain health. Many people – both with and without MS – experience some changes in their cognitive abilities as they get older, such as taking longer to process information or being less able to focus.

The effects of MS and age on cognition differ from person to person. MS can begin to affect cognitive function quite early in the disease process. However, some studies suggest that cognitive problems caused by MS worsen no quicker than would normally occur with age.

In general, people with MS experience a fairly slow decline in cognitive function as they get older. This speed of decline is similar to that seen in people without MS. This table summarises some of the common effects of both age and MS on cognition.

Having a well-stimulated brain might help to slow or lessen the impact of age and MS on your brain. Find further information on looking after cognitive health in older age here.

Mental health

Living with MS can sometimes make you feel down, emotional or irritable. It can also affect your self-esteem. As we learnt in the last section, MS can also affect your brain health, which can have an emotional impact.

When issues such as feeling down or anxious go on for a long time or start to affect your everyday life, they are classed as a mental health condition. Mental health conditions are common in people with MS. For example, about half of all people with MS will get depression in their lifetime. This is a higher rate than seen in the general population.

When living with a long-term condition such as MS, good mental health can make all the difference to your quality of life. Conversely, poor mental health can make it harder to live with the condition and prevent you from living your life fully. Some may feel that there is a stigma attached to talking about mental health. However, it is important that people feel supported and able to discuss and care for their mental health as they get older. There are many ways to take care of your mental health including, getting regular mental health checks, practicing relaxation and boosting your self-management skills. Read more about these tips and others in the graphic below.

Text reads: TIPS how to care for your mental health Get professional advice and support. If you think you might have a mental health condition, or want more support dealing with a current one, speak to your doctor or nurse. They can assess your needs and refer you for support. Talk to others. Speaking to others can help you realise how you’re feeling and the effect this is having on you. Support from others can also give you the courage to seek professional help. Have regular mental health checks. You might not realise how much your mental health is affecting your daily life until you do a questionnaire. You can ask your doctor or MS specialist for a mental health check. Simple ones are also available online: be sure you use a reliable source. Practice relaxation. Getting sufficient relaxation and sleep is important for your mental and physical health. Relaxing properly takes practice. You can find a variety of ideas and techniques in self-help books, on websites and through apps. Boost your self-management skills. Mental health problems should not be managed alone. However, good self-management can support your mental wellbeing and improve your sense of control. See the earlier section ‘Taking control of your health’ to learn how. Image: A graphic of two characters, a man and woman sat on a sofa relaxing. The woman is reading a book.

Read more about ways that mental health, including changes in mental health with age and MS, treatments and mental health for MS carers here.

Secrets to living well with MS at older ages

What general approaches help people to live well with MS as they age? Based on a survey in Canada, connecting with others, attitude, lifestyle choices and healthcare are all important.

Encouragingly, most themes people found helpful are things we have the power to change. These include social connections, outlook on life, lifestyle choices and healthcare. We give more detail in the graphic below.

‘Living well with MS as your grow older’ resource

You can learn more about positive steps you can take to protect your health, wellbeing and independence as you get older in our guide ‘Living well as you grow older with MS’. The guide is available in English, Spanish and Arabic.

Download ‘Living well as you grow older MS’ here.

If you are an MS organisation interested in translating any of the above information, please get in touch at info@msif.org

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