November 2022

Celebrating carers

According to Dementia Australia, approximately 65% of people with dementia live in the community and an estimated 1.6 million Australians are involved in caring for someone living with dementia.

The Forward with Dementia website was developed with the help of carers of people with dementia, and their suggestions, strategies and advice can be accessed via the “For Carers” section of the website. There are five key sections for carers, designed to provide effective guidance of what to do and where to go after a family member or friend is diagnosed with dementia:

• Understanding the diagnosis– making sense of what you are going through and what to expect
• Coming to terms with the diagnosis– to help you manage your feelings in order that you can move forward to adapt to life with dementia.
• Managing change– explores common changes that occur and the interventions and strategies to help you manage these to get on with living life.
• Supporting well-being– provides the best evidence to keep you both happy, healthy and get the best out of your day.
• Making plans and decisions– outlines the ‘life admin’ tasks you need to attend to for peace of mind.

What carers say about Forward with Dementia

Natasha, who cares for her mother said she used Forward with Dementia:

"For problem solving, for trying to find out more about certain things that I don't quite understand, and for links to other resources, like the sensory book.”

Another carer, Graeme, has supported his wife with dementia for the last five years. He said:

"It is probably the best lot of information I’ve found… And one important thing I picked up was in terms of not trying to take over everything. Because it’s about supporting her and being understanding, not taking over.”

For more information on this, see the article Helping without taking over.

Resources for carers

Forward with Dementia also offers downloadable resources to help carers and people with dementia, including a list of Possible questions for your doctor.

Carers can benefit from reading about the direct experiences of others. Check out some of our inspirational carer stories including:

• Val’s story: becoming a dementia advocate
• Cheryl’s story: our dementia diagnosis experience
• Jean’s story: managing emotions after a dementia diagnosis
• Colin’s story: education, social support and self-care for carers
• Heather’s story: moving forward without confrontation.

Peer-to-peer support groups

by DAI Co-founder, Kate Swaffer, MSc.

Dementia Alliance International (DAI) is a registered 501c3 charity, providing global advocacy and support inclusively for anyone with a medically confirmed diagnosis of any type of dementia.

For almost ten years, DAI has provided and facilitated free online cafes and social groups for its members (through Facebook and Zoom). They have produced educational webinars and publications available to DAI members as well as the global community of researchers, service providers, other advocacy organisations, and the broader community. DAI also has an award-winning YouTube channel.

DAI offer online peer-to-peer support groups, which were the first in the world for people diagnosed with dementia. The groups have been running in multiple time zones for almost nine years. Like membership of DAI, the weekly and monthly support groups are free to attend currently, including three peer-to-peer support groups in Australia.

A DAI peer-to-peer support group consists of a small group of people with a diagnosis of dementia, who meet regularly to discuss their experiences, problems, and strategies for coping with the condition, as well as strategies to live more positively with dementia. DAI peer-to-peer support groups are held in multiple time zones, and co-hosts and member also provide one-to-one buddying and mentoring.

The value of peer-to-peer support

The value of peer-to-peer support as part of post-diagnostic services and support should not be underestimated, as two DAI members describe here.

"This is the first time I have laughed since my diagnosis two years ago.”

"...and then it took me another 8 years to get a doctor to believe that I had dementia, you know. And then, there was no support afterwards.”

Research shows that hearing from and sharing with others with similar experiences can be very helpful. A peer support program provides a structured environment in which people who share the same long-term illness or condition can safely share their experiences. The importance of meeting with peers facing the same things as you cannot be underestimated whether it is a life experience, a terminal or chronic illness, or a pandemic.

People who "get it"

No matter who you are, or what you do, or whether you have an illness, we can all use more people in our lives who “get it."

Whilst family and friends, and even professionals working in the field of dementia can be supportive to some extent, they don’t really know how we feel, or even why it can be so hard for us sometimes.

Many of the disabilities caused by dementia are invisible or sporadic, so it is sometimes difficult for people without dementia to understand the day-to-day life and difficulties people with dementia face.

At DAI our hope is that peer-to-peer support for those of us diagnosed with dementia will become the norm, that doctors and health care professionals will refer their patients to DAI, and they will be included in all post-diagnostic pathways or care plans from the point of diagnosis.

Nutrition and dementia

Some people with dementia find that their appetite changes. They might feel more or less hungry or have unhealthy cravings. Because of appetite changes, people with dementia sometimes gain or lose weight. Some people with dementia can forget to eat and become malnourished.

Mediterranean diet

Research shows that a Mediterranean diet can help prevent dementia, but we don’t have proof that this diet helps people who have dementia. The Mediterranean diet has less sugar, less red meats and less processed foods. You don’t have to cook Mediterranean recipes, just eat foods commonly found in Mediterranean diets:

• plenty of vegetables
• legumes
• grains
• nuts
• some fruit
• fish and seafood
• olive oil
• smaller amounts of meat
• some dairy.

Drink healthy

Studies suggest that people who are dehydrated don’t think as well. Stay hydrated by drinking at least 8 cups of water a day. It’s easy to forget to drink, and the ability to sense thirst goes down with age.

Make it part of your routine to have a glass of water with every meal, and in between meals too. Water is the healthiest choice, but tea, milk, juice, and soup can also help you stay hydrated.

Drinking a lot of alcohol (i.e. more than 7 drinks a week for women, or more than 14 drinks a week for men) increases the risk of getting dementia. Heavy drinking may also speed up deterioration in people with dementia. For more information, read our recent blog post Alcohol and dementia.

Tips to maintaining good nutrition

• If shopping is difficult, consider using online shopping with home delivery. This is offered by the larger supermarkets, but many shops in small towns will offer this service.
• Consider getting a meal service. You can order a couple of meals a week from a provider like Hello Fresh or Marley Spoon who will deliver all ingredients with a recipe for a meal of your choice. This can be a good way to try new meals and add variety to the weekly diet.
• Supermarkets often sell pre-prepared vegetables for salads, soups and stews. This can cut down on preparation time.
• Cook in bulk. When you cook, make double quantities and freeze portions for later.
• Ask others to help. Often family members or neighbours are happy to cook extra meals to freeze.
• Involve the person with dementia in cooking. Even if they haven’t been interested in cooking previously, get them involved particularly in meal preparation. Preparation can sometimes stimulate the appetite.
• Keep nutritious snacks like nuts, unsweetened yoghurt and fresh fruit on hand.
• If you need to change diet, do it gradually. Start with one or two small food changes until they become habit. For instance, drinking enough water, or eating more vegetables.

Nutrition levels

There are current research studies into a variety of nutritional supplements to determine if they reduce symptoms of dementia.

There is some evidence the supplement ‘Souvenaid’ may help slow progression in early Alzheimer’s disease. It is available via pharmacies and online chemists. Current Australian Dementia Guidelines recommend that Souvenaid not be used for people with moderate or severe dementia. Read more about this Souvenaid on Dementia Australia’s website.

If you are at all concerned about your nutrition – or the nutrition of the person you support, ask your GP to check levels of key vitamins and various blood markers for nutrition.

If required, your GP can refer you to a dietitian for specific advice. You may be able to do this as part of a chronic disease management plan, and get subsidised visits to a dietician.

Dietitians can advise on particular issues that may affect eating, including poor teeth or dry mouth, as well as a healthy diet if people have other chronic health conditions. Visit Dietitians Australia to find a dietitian near you.

For more information on Forward with Dementia:

People living with dementia can read:

• 4.2 Exercise to boost your physical health
• 4.3 Eat and drink well
• 4.4 Rest well

Carers can read:

• 4.2 Types of exercise
• 4.3 Eat well
• 4.4 Get plenty of rest

For more information on other websites:

• Read the Dementia Australia What you eat and drink and your brain fact sheet
• Read Dementia Australia’s website information on Nutrition
• To find out about malnutrition, see the Dietitians Australia website

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• who are worried that they, or someone they care for, may be getting dementia; OR
• who have recently been diagnosed with dementia, or care for someone recently diagnosed.

Mental health and dementia

Up to 70% of people with dementia experience symptoms of depression or anxiety. These symptoms include low mood or feeling sad or blue, constant worry or feeling stressed, crying more than usual, feeling tired a lot, having trouble sleeping (either falling asleep, staying asleep or waking up too early), and loss of interest in things they used to enjoy.

About 30-40% of people with dementia have clinical depression or anxiety which means they have more severe or persistent symptoms. Scientists think the brain changes related to dementia might also cause depression or anxiety. The symptoms can also be a reaction to being given a diagnosis of dementia, or to lifestyle changes because the person has dementia.

“There is hope and a lot of it has to come from within you. You have to understand and accept the diagnosis. As soon as you can do that, you can start moving on with your life,” Bill Yeates, Dementia Advocate.

Counselling, including grief and loss counselling, and cognitive behaviour therapy can help people manage their depression or anxiety.

Get support

• Dementia Australia offer free, confidential, professional counselling for individuals, families, couples and professional carers at all stages of a dementia journey. To access this service call the National Dementia Helpline on free call 1800 100 500.
• Dementia Advisors are available through most of Australia. They offer a range of information, as well as group and one-on-one sessions and can support you to obtain other supports and services. There is no central contact point for the Dementia Advisory Service, search through Google to see if there is one available in your area.
• Find a psychologist (ideally with experience working with older people, or people with dementia). Note that this service may not be subsidised unless you have a Mental Health Treatment Plan (see below). Sometimes private health insurance covers some of the costs.
• If you are experiencing relationship conflict with a loved one, use Relationships Australia. They have Senior Relationship Services counsellors and mediators trained in elder mediation and counselling with specific skills in delivering services to people experiencing conflict about ageing-related issues.  They have professional qualifications and experience in social work, psychology, mediation, law and/or counselling, and receive on-going training and professional supervision.
• Talk to your GP about how you’re feeling. They can assess your mood and give you a Mental Health Treatment Plan if needed. A mental health plan means you can get up to 20 subsidised visits to see a psychologist, occupational therapist or social worker each year.
• Medications can help with depression and anxiety, though they are not always effective for people with dementia. Talk to your GP if you want to try medication to see if it will help. Some medications may also have side effects that can affect your mood – please talk to your GP or pharmacist if you are concerned.
• Beyond blue have useful resources for older people on managing mood.

Other supports

People with dementia and carers find attending an education and support group helpful, such as the Dementia Alliance International peer-to-peer support groups. You can learn more about dementia, share stories and make friends with others going through the same experience. For many people, meeting others living positively with dementia is a turning point in finding hope.

There are also post-diagnostic support programs for people recently diagnosed and their carers. These programs can help you to adjust to the diagnosis and provide support and practical strategies to stay living at home.
 

If you are finding it difficult to come to terms with your dementia diagnosis, the experiences of others may help. Read these stories on the Forward with Dementia website:

• Jean’s story: managing emotions after a dementia diagnosis
• Carol’s story: when caring for the carer is important.

Website resources

• Downloadable resources for people with dementia and carers
• Tools and resources for your clinic.