Dementia Care: How To Support Your Loved Ones
04 August 2020
Has your mum, dad or someone close to you received the diagnoses that they have dementia? Do you know what challenges to expect for both you and your loved ones? This article will give you a better understanding of dementia, including finding the correct support and how family/whānau can care for your loved one.
One of the lesser-known global health challenges for the 21st century is the dementia syndrome, which includes Alzheimer's disease. Currently, there is an estimated 44 million people around the world living with Alzheimer's disease or a related form of dementia.
In New Zealand, there are over 41,000 people currently living with dementia, which will almost double to 75,000 people by 2026 (Dr Kathy, 2014). This fact alone demonstrates why we need to learn more about dementia, as it could affect our loved ones.
First of all, what is dementia?
Dementia is an umbrella term that describes a set of symptoms that alter the physical structure of a person's brain, leading to a gradual loss of brain function. According to Alzheimer's New Zealand, the most common form of dementia is Alzheimer's disease. Anyone can get dementia, and the risk of developing this disease is higher as the person gets older.
How the brain is affected will result in how the person experiences the symptoms, which means dementia can be different for everyone. Common symptoms include changes in memory, personality, behaviour, thinking and emotions. These changes can interfere with how a person lives their life as it directly affects their ability to perform usual daily tasks.
Dementia is progressive as it spreads through the brain, meaning that the symptoms can get gradually worse over time.
Experiencing dementia can be different for everyone, but how quickly symptoms progress is unique to each person. What someone with dementia and their friends/whānau can do as caregivers is remember and understand that things may change from day to day.
What causes dementia?
Dementia has multiple causes that manifest as different diseases; Alzheimer’s is the most common. Someone living with dementia can be affected by multiple different causes. Each cause affects different parts of the brain and provokes different behavioural changes:
- Alzheimer’s is caused by amyloid plaques and neurofibrillary tangles that together disrupt chemical messengers in the brain. Symptoms may initially include difficulty remembering things, finding the right words to say, and problem-solving.
- Vascular dementia is caused by an insufficient blood supply to the brain, due to many small blood clots overtime or a history of blood vessel damage to the brain, like a stroke. This insufficient blood supply can cause brain cells to be damaged or die, reducing brain function. Symptoms depend on which part of the brain has been affected. Common symptoms include the ability to pay attention, slowing of thought and frontal-lobe changes.
- Lewy Body Dementia (LBD), which includes Parkinson’s disease, is caused by large abnormal protein deposits in the brain called Lewy Bodies, altering the brain’s chemical balance and leading to cell death. Around 20% of dementia cases are LBD, with symptoms being changing levels of alertness, movement difficulties, spatial and attention issues and sometimes hallucinations. In the early stages, memory is not usually too impaired, but as the condition progresses, all aspects of thinking are more widely affected.
- Frontotemporal dementia often affects people in their 50s and 60s. It is caused by damage in the frontal and/or temporal lobes in the brain by abnormal proteins. Symptoms can include personality and behavioural changes as well as difficulty with speech and understanding language depending on the location of the damage in the brain. According to Dementia NZ, Frontotemporal dementia may be caused by genetics, as 40% of people with this form of dementia have a family history.
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THE CHALLENGES FOR someone WITH DEMENTIA AND Their FAMILY
It can be challenging to receive and accept a dementia diagnosis, especially if it is for one of your loved ones. You and other family members might not have expected the dementia diagnosis, or you might have been noticing symptoms for some time.
How To Find dementia support & information
It's vital to access the right information and understand where to get dementia support. A local GP will be able to give great advice and support as well as provide the necessary information and answer any questions that you may have.
Reaching out to a local Alzheimer's organisation is another way to get support, whether it's receiving help or discussing how they feel with someone who understands. Your local Alzheimer's organisation can suggest a home and community support provider, such as Geneva Healthcare, to give your loved one the right support to continue living life to the fullest.
Your local GP can also refer your loved one to their local Needs Assessment and Service Coordination (NASC) service. The NASC can work out what level of care your loved one needs and then refer them to a dementia support provider like Geneva Healthcare.
We provide support services to help people continue to live in their own home, or transition into residential care. Such services may include:
- Help at home such as cleaning, meal preparation, and cooking
- Personal care like showering, dressing, medication management
- Respite care to give family members a break
- Transport and shopping
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Caring for someone with dementia
Below are things to think about when a primary carer (e.g. a family/whānau member or a friend) starts to take care of someone who has dementia.
The home environment
People with dementia need to be able to live in a friendly & familiar environment where they can be as independent as possible, including living in their own home. The familiarity with their home will help them navigate where they want to go and help to ensure they don't get lost. It's important to note that moving furniture and appliances from their usual place may also confuse them, which could lead to injuries if they fall over.
One of the most frustrating problems for people with dementia is when they lose the ability to communicate, affecting them, their family/whānau and anyone in their circle of support.
How dementia interferes with a person's ability to communicate will be unique in each case. However, as the illness progresses, a person with dementia will find it more and more challenging to speak or express themselves clearly. It also affects their ability to understand what others are saying to them, making them feel more stressed, angry and resentful.
When conversing, be patient and let the person with dementia express themselves; however, they can. Where appropriate, either party can use body language or touch to convey what each person wants to say. Avoid cutting them off while they are talking and try not to finish their sentences for them as this will lead to frustration.
It's important to reassure people with dementia that they are loved and accepted. They need to know that they are safe and cared for as it will help to alleviate stress for them and their loved ones.
MEAL PREPARATION & Nutrition
It is especially crucial for people living with dementia to have a balanced and nutritious diet, and drink plenty of water daily. It's easy to overlook these simple tasks, which results in poor eating habits. The reasons why they might not be eating nutritious meals could include:
- Forgetting to eat
- Changes to their taste as their condition progresses
- Confusion of what to do with their utensils
- No longer being able to prepare their own food
Some ideas that can help them are avoiding rushing mealtimes and keeping an eye if the person with dementia tries to eat any non-food items. It could signal hunger, in which case you can offer them a proper meal or snack.
It's also helpful to monitor the changes in the person's tastes so that you can adjust their food accordingly. Some increasingly prefer sweet foods, so fruit, naturally sweet vegetables, and sauces or chutney on savoury meals can make them more appealing.
It's common for people with dementia to also suffer from incontinence, which is a lack of voluntary control over when they need to go toilet. Incontinence happens when their brains no longer send or receive any signal to recognise that they need to go to the bathroom. They may also forget where the toilet is or might be unable to hold on. Some tips to help at home could be putting a sign on the door of the bathroom (either text or a picture), creating a clear path with no obstacles, and adding handrails or other mobility aids where needed.
Intimacy & sexuality
The way people with dementia give and receive affection may depend on how dementia affects them. Some people can become quite demanding and insensitive to others' feelings and needs. In contrast, others might prefer little to no affection at all.
The same can apply to their expression of sexuality. In some cases, people with dementia can stay sexually active, while in other cases, they might not have any interest at all.
A healthy way to maintain intimacy for people with dementia is to identify the symptoms or behaviour to provide them with necessary physical contact in everyday routines. Massaging, holding hands and hugging are great ways to continue showing them love.
However, inappropriate sexual behaviour (ISB) is believed to be quite common for people who have dementia (Riccardo & Hugh, 2016). For cases like this, please seek advice and support from healthcare professionals immediately. Any form of abuse is never ok, especially when it involves vulnerable people.
Tasks for personal care might be more difficult for people who have dementia. Changes in bodily functions as they advance in age, and increasingly impaired mobility may mean they need help with things that they used to be able to handle before.
As dementia affects each person differently, everyone will also have their way of dealing with these processes. Family/whānau should focus on being gentle and patient, searching for an approach that suits both of them well.
People who have dementia still have feelings just like everyone else, even if they struggle to understand or express these emotions. Always consider their dignity and self-esteem, and let them know that they are safe. Kindness and gentle positivity could make a loved one with dementia feel more at ease.
Support for the family carers
Taking care of someone with dementia requires a lot of patience, energy and hard work. It can be both rewarding and challenging, often at the same time for family/whānau. Sometimes, the changes can be extremely distressing and stressful (such as memory loss, or decreased control of bodily functions). Each member of the family/whānau will be affected differently. It's essential to care for each other, as well as the person with dementia.
HOW DEMENTIA Can AFFECT FAMILY/whānau
There are patterns that our brains often follow when accepting an unwelcome change. Sometimes, the family/whānau of the person living with dementia can be in denial, or embarrassed. They might also not know where to seek advice or might not want or be able to provide their assistance. This may lead to further negative consequences like stress, (emotional, physical and financial), which can then lead to burnout.
Other effects of dementia on family/whānau or carers can include:
- Loss such as experiencing the grief of losing the loved one in their familiar form
- Role changes e.g. suddenly becoming the main decision-maker in the house
- A need to increase knowledge and skills so that they can provide appropriate support
- Abuse from the person living with dementia as they can become agressive towards carers if they don't recognise them. It can also be flipped around, with the family carer abusing the person with dementia (this is a sign that the family carer may need respite or a clean break from the environment). Any abuse should be immediately reported to a health professional.
- Impacts on their health (both physically and mentally) and their social and spiritual life
Accepting the “new normal”
It is completely normal to feel a whole range of emotions after finding out a loved one has dementia. It is a big adjustment to make, and it is OK not to know how a person 'should' be feeling.
It's important to note that loved ones should not deny any feelings they may have. People need to share them by talking with family/whānau and their friends to try and feel better.
Laughing is also OK. Laughing releases 'feel-good' chemicals in your body that help keep worries in perspective, it might even cheer up the people around you as well.
Some people find it helpful to write down their feelings as it helps them to adequately assess them.
Remember to be kind. Get out of the house, exercise, do something you enjoy and focus on how good that makes you feel.
Managing your feelings
If you are a loved one caring for someone with dementia, you may often experience extreme feelings. Guilt, grief, anger and loss are some of the most common feelings when the carers are family/whānau members.
Dealing with these feelings can be hard at times, but these complex and changeable emotions are absolutely normal. Don't bottle them up by yourself, reach out and ask for support.
Accepting outside help is one of the best ways family/whānau can ensure their wellness, and help to maintain the level of care they desire for their loved one.
There is no guilt in reaching out to Dementia Care Services provider like Geneva Healthcare. We have people trained and qualified to support people with dementia.
Take a break
We all deserve a break from whatever we are doing, even if it is taking a break from caring for someone you love. Once again, this is often the best way to ensure that you stay well, and the care for your loved one with dementia is sustainable.
Looking after someone with dementia might not only be stressful but can also be physically and emotionally tiring. Often, family/whānau members of people with dementia may not feel like they can leave the person they are caring for. This socially isolating behaviour is not healthy and needs to be intervened by regular breaks.
That can just be a short break in a park, or meeting up with some friends, participating in a hobby or sport, doing errands or even work. Ideally, you should also feel that you can take a weekend away or go on holiday.
Also worth noting: It is healthy for people with dementia to go out, socialise, meet other people and even visit new places.
How to take a break
Ask other family/whānau members or friends to step in and help you out. This will give you a chance to have a break. Sometimes, it is just a matter of asking. Try to ask them to help you with specific tasks such as meal preparation, medication reminders, shopping or housework.
There are also respite care services available from a healthcare provider like Geneva Healthcare, as detailed below.
Day programmes or services
Day programmes provide care to people with health conditions who require personal care services, assistance with daily living tasks or protective supervision.
These programmes and services not only give you both a break from each other, but they also provide people with dementia a chance to participate in exciting activities and socialising. They help people with dementia get out into new space and give them an experience of having others care for them.
What is Respite care?
Respite care is a planned or temporary emergency care service provided to the caregiver of a child, adult or senior. Funded by your local District Health Board (DHB), respite care can be in a short term care facility, in a day programme, or even in your own home.
Some people might take a while to get used to the idea of having someone else taking care of their loved ones, while others feel more comfortable to rely on respite care. Whatever the case, it is healthy to start using regular respite care as early as possible, so that everyone can get used to having these breaks.
Respite care is a partnership between you and the respite provider. We are there so you can have both physical as well as mental relief. We will work with you to make the most of the time.
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If you find this article helpful, please share it with your friends and family so that they can also learn about dementia and what things to watch out for.
Getting professional dementia support
Getting professional support from a provider like Geneva Healthcare has many benefits. It can give the family and person living with dementia reassurance that the support provided is of high quality and done by a professional that's trained and qualified to look after people with dementia.
Providers also can give clinical oversight on all support plans and care provided by Support Workers or nurses, as well as provide advice if any concerns need addressing.
They can also connect you with other services you may need like lawn mowing, rehabilitation after a fall, or help to find mobility equipment.
Using a mixture of support from family as well as a professional Dementia Support provider, such as Geneva Healthcare, can work out well for the family/whānau, as well as the person living with dementia.
Best of all, the person with dementia can receive these support services in the comfort of their own home. Staying at home helps to avoid the added stress of finding and moving to a new place, and it can also help the person to remain in a familiar environment that they can call home.
Talk to Geneva Healthcare to find out how we can support you and your loved ones with Dementia Support Services and Respite Care.
The best living environment for a person with dementia is one that helps them be as happy and independent as possible, and that is often in the comfort of their home.
Our Geneva Certified healthcare experts, who have been carefully selected for your loved ones, can come to the person with dementia's home and help them keep living the way they want to live.
We'll work with them, their family, and their primary care team to provide a personalised care plan and follow-up programme. We offer 24/7 wraparound support that gives real choice, real care and real peace of mind to everyone.
Our services are free to those eligible for government funded support. Privately funded services are also available if required.
What's included in home support Dementia Care Services?
- Help at home such as cleaning, meal preparation, and cooking
- Personal care like showering, dressing, medication management
- Respite care to give family members a break
- Transport, shopping, and companionship
- Provision of routine care, meaningful activity and, where required, personal care for the Service User
- Conducting regular reviews of care practice and personal needs
- Ensuring medications are taken safely and on time
- Maintaining personal dignity, independence and self-esteem
- Support in continuing familiar daily routines
- Managing changing and challenging behaviours
- Providing updates to family/whānau on the progression of symptoms