Caring for someone with a younger onset dementia can be very challenging. Many people never imagine being a carer for a partner, relative or friend in early or mid-life. It is often the case that the diagnosis of younger onset dementia is delayed and this delay and associated uncertainty of diagnosis can cause considerable stress to all involved.
A diagnosis of dementia can come as a shock, even after years of doctors’ visits and medical investigations. In the initial stages shock, sadness, anger and disbelief are common reactions to the diagnosis. These feelings are normal. When a person is younger, a diagnosis of dementia raises many challenges for the rest of the family. People with frontotemporal dementia are generally active, mobile and physically capable. As a consequence caring for a younger person is more demanding than caring for an older person. The person may have been in full-time employment, actively raising a family and be financially responsible for the family. A carer may have to juggle caring for the person with dementia with employment, childcare, and even care of an older frail parent.
Everyone feels differently about becoming a carer. People react in different ways. “Why me?”, “Why our family?”, “What did we do to deserve this?’, “What caused the disease?” These are very common questions often with no definitive answers. This uncertainty can lead to feelings of anger and frustration. By obtaining an accurate diagnosis you can begin to learn about the type of dementia, the causes and symptoms, and what to expect in the future. Your feelings and experiences are individual and may differ from those of other carers. You will feel many different emotions along the journey.
Changes in relationships
The act of caring for someone with younger onset dementia can lead to a change in relationships. FTD is a disease that affects the whole family and social network. The carer and the person with FTD have to adjust to major shifts in their roles in the relationship. Carers may feel a sense of resentment that comes with the responsibility of looking after someone. Many people have to alter their hopes, dreams and expectations regarding their future together. Carers often find the change of roles difficult to adjust to. For some families the person they are caring for is ‘not the same person’ anymore. Feelings of resentment, anger, guilt, frustration, love, hate, loss, and grief are normal. Sometimes you will feel all of these emotions in the same day. There may come a time when the person with FTD becomes unable to care for or provide for the family. This can lead to financial difficulties within the family and may place the carer under financial strain. It is important to obtain sensible financial advice early on so you can make decisions together and plan for the future.
Dr. Bill Jenkins, a psychologist, academic and carer for his wife who has Frontotemporal Dementia, is examining the impact of caring for a loved one with Dementia on the personal relationship between carer and patient. It provides an opportunity for carers to share their personal experience of caring for a loved one with Dementia. For more information: www.dementia-care-research.com.au
Caring and personality types
Some people are ‘born carers’. Some people are not suited to the caring role. You need to think carefully and honestly about yourself and your own strengths and limitations. Why are you the carer? Is it because you love the person you are caring for? Do you feel a sense of duty or obligation to take on the caring role? Is there an expectation from either the person with dementia or extended family or friends? Are there financial reasons why you are the carer? Or is it because there is no one else available? It is important to understand the reasons behind your decision to become the carer. Caring can be a rewarding and positive experience for some individuals. They surprise themselves by finding inner strength, resilience, and an ability to tolerate adversity, and they find a sense of humility and purpose. But for some people the responsibility and work involved is overwhelming and mentally and physically exhausting. Every carer needs regular breaks to avoid burn out. You will need to continually assess how you are managing the multiple demands. Some people will not be able to continue as a carer for their own health and well-being.
There are lots of different ways of coping when you are caring for someone with younger onset dementia. Carers who use an active ‘problem-focused’ approach tend to cope better over time. This means they experience greater levels of wellbeing and lower levels of depression and burnout.
Examples of a problem-focused approach include:
‘Emotional’ coping styles tend to be less productive. Examples of emotional coping styles are:
If you are having difficulties coping and adjusting to your role as a carer it is important to seek assistance. Often the act of talking to someone can help you to understand that you are not alone and that there are potential solutions to common problems. It is very hard to make sensible decisions and to solve problems when you are under considerable stress. There are many places to seek help (see Further Information list). Many carers benefit from seeking professional counselling to assist in the adjustment process.
The importance of looking after yourself can’t be overemphasised. Remember that if you are not physically and emotionally healthy you will not be able to continue in the role of carer.
Looking after yourself includes ensuring that you have pleasurable activities for yourself and that you continue to keep in contact with people who are supportive and positive in your life.
Consider ways to manage stress. This may be through activities such as yoga, pilates or tai chi. Many carers find regular exercise either alone or with their partner a great way of reducing stress. You may find local classes on relaxation or meditation beneficial or you may use CDs and books on these techniques. These resources can be bought or borrowed from the local library.
Some people find support groups beneficial. These provide a network of people who are caring for people with similar problems. People support each other and share useful tips on how to manage.
Contact Alzheimer’s Australia for information on ‘Younger Onset Dementia Support Groups’ and the ‘Living with Memory Loss’ groups.
Contact the National Dementia Helpline 1800 100 500 or visit alzheimers.org.au for contact numbers in your State or Territory.
For more information on caring for someone with dementia see the Alzheimer’s Australia website at alzheimers.org.au, then select Family & Carers > Caring For Someone With Dementia.
Impact on other family members
Dementia not only affects the people who have the illness but everyone around them. It may have taken some time to get a diagnosis and this can cause considerable frustration and even changes to the way people think of the person with dementia. Providing information to family and friends will help them to understand the disease and assist the person with dementia. Other people’s reactions to the changes they see will vary and their ability to support and help will vary. Remember that we are all individuals with different coping mechanisms. Denial of the illness is common, especially in the early stages.
Many people with younger onset dementia will have dependent children who may still be at school. Children are very vulnerable and are likely to have difficulty understanding the illness in their parent and the inevitable change in roles within the family. They may not understand the changes in behaviour that happen in dementia and may think that they are causing the behavioural problems. They may benefit from counselling to assist with many conflicting emotions, including fear, grief, frustration, and loss of the person or parent they knew. There are books explaining dementia that have been written especially for children and these may be helpful. It may also be beneficial to advise the child’s school teacher or counsellor about the situation. Information for children is available on the Alzheimer’s Australia website alzheimers.org.au then select Family & Carers > Young People & Dementia.
The Association for Frontotemporal Degeneration (AFTD) has a new booklet/resource to officer guidance and practical tips for people who have children at home when a spouse or partner has FTD. It is called “What about the Kids”.
NeuRA is coordinating the Sydney site for the DIAN (Dominantly Inherited Alzheimer Network). This study sets out to look for biological changes that occur in people before they develop the Alzheimer’s symptoms such as memory loss. Over the last two years, NeuRA has been working on a clinical trial program aimed at preventing the symptoms of Alzheimer’s by removing amyloid […]