More than 400,000 people across Australia have a dementia diagnosis. With that number increasing every year, there is a very likely chance that you may know someone, or will develop dementia yourself.
Dementia doesn’t just alter the life of the person with the diagnosis, it also impacts their partners, children, friends and colleagues. When one person has dementia, a whole community is affected.
It is estimated that there are slightly more women with dementia, with 55%, than men who are approximately 45% of dementia cases.
Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person’s ability to function including a loss of memory, social skills, intellect, rationality, and physical functioning.
When a person goes through changes like these, it can have a large impact on their interactions with other people and relationships with loved ones.
Because dementia symptoms are unique between each individual, there is no way to be certain on how it will affect people’s lives or exactly how to cope.
Everyone has to adapt as dementia progresses and as roles within relationships change. Relationships need to be re-framed and constantly renegotiated as time passes.
Alzheimer’s Australia conducted an in-depth research looking at the impact of dementia on relationships. They were able to find four key themes that were recurring with most participants; role and identity, emotional and physical intimacy, grief and loss, and positive impacts.
Role and Identity
Dementia can impact on the roles people hold and consequently their sense of identity within their relationship.
When a person has dementia, there is a high chance that they will experience a loss of independence as responsibilities they held within a relationship are taken on by others.
It’s not uncommon that they fear burdening others with a carer role or other responsibilities they once managed.
Children and carers may gradually have to take on more responsibility for decision-making, which they may find overwhelming and result in feelings of resignation or resentment.
Children caring for their parents often feel that the roles are reversed and they are parenting their parent with dementia. This experience is challenging, confronting and upsets the natural order of relationships – no one wants to feel as though they are parenting their parent.
Emotional and Physical Intimacy
When a person has dementia, it can alter the emotional relationship and intimacy they hold with loved ones.
Intimacy can be defined as feeling close to your loved ones, sharing and accepting feelings, and being emotionally vulnerable and available.
Dementia can result in communication difficulties and memory loss, which can make sharing experiences and memories increasingly difficult.
Many carers and family members can feel that as a person with dementia changes, due to their symptoms, that the heart of the relationship is lost.
On top of that, many people with dementia, as well as their carers, can feel socially isolated after a diagnosis. Friends can become more distant after a diagnosis and symptoms of dementia make it harder to connect with people.
Carers fear leaving the person alone, and thus withdraw from going out or socialising. And the impact of memory loss is keenly felt when the loved one with dementia intermittently or permanently does not recognise their carer.
Grief and Loss
Many people feel stressed and frustrated when caring for someone with dementia, and it is not uncommon for them to also feel guilty and some grief surrounding their relationships as the dementia progresses and their caring role intensifies.
The grief experienced by these carers could be categorised as ambiguous loss, which is different from the loss and grief of death, because the grief cannot be fully resolved while the person with dementia is alive.
It is the loss felt when a person with dementia is physically here, but may not be mentally or emotionally present in the same way as before. Ambiguous loss complicates grief as it is continual, difficult to recognise and confuses relationships.
The emotional impact of the person with dementia moving into residential aged care is substantial, the experience of placing a person with dementia into an aged care home is often characterised by stress, emotional upheaval and feelings of relief, loss, grief and guilt.
For the person with dementia, moving into care can be disorienting, dis-empowering and emotional.
People with dementia and carers can both feel grief and loss for the person they were, the role they had, their relationship, the shared history and the future.
Guilt, as well as anger and resentment are normal emotional reactions associated with this grief.
While there are many stories of challenges, struggles and loss, some people are also able to identify some positive impacts of dementia on their relationships.
For some, dementia had provided opportunities to reconnect with loved ones and establish new relationships with the person they care for.
Some carers spoke about how the emotional connection with their loved one with dementia remains – even if the person with dementia doesn’t appear to know them, there are still moments of connection.
Though dementia can be challenging for families and carers, some said that they felt satisfaction from caring for their loved one and that they appreciated of the opportunity to spend time with them.