It is possible after a diagnosis of dementia, for you and your loved one to live well through the journey of life with dementia. Although you may experience many changes to both your lifestyle and relationships, as well as feelings of grief and loss, you might also find that much personal growth and meaningful new experiences will also happen.
The Carer Gateway is a national service providing practical supports for carers. In Western Australia services are managed by Carers WA. Alzheimer’s WA works closely with Carers WA to ensure support services are available to carers of people living with dementia.
The Carer Gateway services include carer support planning, peer support, counselling, carer-directed packages and emergency respite care. Services are free for anyone looking after a family member or friend who has a disability, a medical condition, mental illness or someone who is frail due to age. This includes all people living with dementia.
You can find out more about the Carer Gateway online at carerswa.asn.au/our-services/carer-gateway-services or call 1800 422 737 (Monday to Friday 8.00am – 5.00pm).
Be kind to yourself
Looking after yourself when caring for and supporting others is essential, this is no different when the person you are supporting has a diagnosis of dementia. Looking after yourself is not solely for the outcome of being able to have energy to look after someone else, it is also so that you can nurture and put energy into your own quality of life. It is important to continue to nourish your life.
There are many ways we can be unkind to ourselves such as when we place unrealistic expectations on ourselves, judge ourselves and our actions and when we don’t afford ourselves the opportunity to be ok with whatever it is we are feeling and experiencing. Being a support person is a huge journey in itself and making sure you acknowledge and value that will help you navigate your way through.
Keep communication channels open
When supporting a person with dementia it is important to not only acknowledge their experience, but yours also. Keeping communication channels open and sharing your experiences with each other can help with understanding each other’s journey. This can help with feeling validated and heard and can offer an experience of being understood for both you and your family member(s). We may not always be able to change the way something is or the experience a person is having, but we can help each other to navigate a way through that experience in a supportive and caring way.
You may find that you become a translator of sorts for the family member you are supporting, helping them to connect and share their experience with those around them.
Seeking help from a third party such as a counsellor to support the exploration and sharing of each other’s experience is always an option. An independent and objective person could bring new perspectives and tools that could help.
Look out for unintentional dis-enablement
We can sometimes think that supporting and caring for someone with dementia requires a lot of ‘doing for’ them. It may be, that the person with dementia requires some assistance with some tasks, but there can be a tendency to ‘over do’ for the person. This ‘over doing’ not only creates pressure for yourself, but it can dis-enable and undermine the person’s capacity to do for themselves and to contribute to the relationship, house hold and / or community.
This ‘over doing’ unintentionally dis-enables the person, and when a person with dementia is dis-enabled, or in fact any person, it can have detrimental effects on their sense of self-worth, identity and overall health and wellbeing.
It’s important for all of us to have avenues to contribute to the environment and community around us. It can give us a sense of independence. This is no different for the person with dementia and every person with dementia has a right to as much independence as possible and to have the freedom to actively contribute to their relationships, environment and their community.
There are services that can provide some of the practical day to day support which will support you to retain a relationship with your family member that is not centred entirely on functional tasks. The impact of a dominant focus on function, task and disability can be detrimental for both you and your loved one.
Stay connected to family, friends and community
What seems to be a common experience for people living with dementia and those supporting them is a gradual isolation from their social connections, friends and extended family, leaving them feeling lonely, isolated and disconnected. We know that as human beings we are social creatures and social connections are important contributors to our overall wellbeing, sense of self and quality of life.
Maintaining relationships can be vital for both of you, staying connected with family, friends and established community connections can contribute a great deal to your quality of life and can also bring a stabilising and normalising experience. Influences outside of you immediate relationship and your supporting role can help re-energise and stimulate both you and your family member.
When consulted on this topic, many people with dementia and their supporting partners, share that friends tend to become distant and peel away and they feel the impact of this greatly. Often this peeling away can be because of stigmas and misunderstandings associated with dementia. (link to stigma section) Because of this, people can often feel afraid that they won’t know how to ‘be with’ the person with dementia. It may take you to initiate contact and reach out, helping those you are close to understand the experience of dementia, by educating and talking with them. This reaching out and sharing of information can contribute to the maintenance and sustainability of those relationships and to the continued work of bringing awareness to and debunking the myths associated with dementia. This in turn can bring great value to the experience of life for you and for the person living with dementia.
A great tip to share with people who are unsure of how to be with a person with dementia, is that all they need to do is be genuine and congruent, essentially be themselves. Bringing the focus back to the person, and away from the disease being at the forefront, will also help breakdown existing barriers. Normalising the experience can be helpful – we often think we need to approach a person with dementia in a certain way – but ultimately we just need to be ourselves, responding to our interaction with them, in the moments we share with them, as we would anyone else. To see them as the person they are and not let the disease shadow that sight.
Adjust to change
We all have certain ways we adjust and cope with change. A diagnosis of dementia can bring big change to your life and to the relationship you have with the person with dementia. Although some of the change that comes with a diagnosis of dementia will be painful, if we continue to stay open to the possibilities of change, we might begin to see what it can also add to our life rather than just experiencing what we see it taking away. This is not to underestimate the impacts of a diagnosis of dementia but to ensure that all facets of the journey can be acknowledged.
It can be hard to let go of how things might have been, the pressure of this for everyone involved can be substantial. For the person with dementia they can feel the pressure of trying to be how they were, live up to a standard or expectation and feel a sense of failure and incompetence if they can’t. Change means change, and this means that things might not be exactly as they were. Although often challenging, acceptance can be a helpful and positive quality in times of change.
Try not to hold onto things as they used to be, although some parts of your relationship might stay the same some parts will also change, this is inevitable and would happen with any big impact on someone’s life. Embracing this change can strengthen and grow your relationship. It doesn’t just mean the loss of something it also mean the beginnings of something new.
Focus on abilities not just disabilities. Seeing the person before the disease
Focus on the person hood of the person…emotional psychological wellbeing not just the physical needs. It can be easy to start to focus on what the person with dementia cannot do, what abilities they have lost, however this can be detrimental to both you and the person living with dementia. It can also put Dementia in the forefront and this can inhibit the person being seen. The person is not the disease, they are always a person first who is living with the impacts of dementia.
Vulnerability and empathy not sympathy
Empathy helps us connect with another person on a deep feeling level and although we are not having exactly the experience they are, we can get a sense of how they might feel. This helps us connect to our compassion and extend that toward the person. An emphatic response reminds us that we are not alone, that we can be understood and that someone is interested in being with us in all sorts of weather. It breaks down walls and through the confines of the stigmas of dementia.
Having and sharing empathy for a person means we will need to ‘be with’ the person. Being in empathy does not require us to be experts, it just requires us to be our true selves in congruency. We don’t need to be leading, to be thinking, it’s really is as simple as being in the space with the person. Responding to them as they are in the moments you are with them form a true authentic interaction between you.
Empathy happens when we show genuine interest, try to understand and consider without making assumptions about another person’s state of being, current reality and feelings. It is true that we ourselves do not have dementia but this does not have to be a barrier to understanding the person with dementia, we just need to show we are trying to understand, that we get a sense of what it might be like for the person. We can only get this sense when we are truly connected and engaged with the person.
Empathic Listening is listening to the client’s perspective. Listening through the words – for important messages. It’s really trying to understand what the person with dementia shares and then sharing that back to them to ensure you have understood correctly. This shows that you are truly paying attention and are interested in what they are sharing with you beyond simply seeking an answer to a question. This helps build trust and contributes to the person feeling listened to, acknowledged and understood. Empathic listening notices themes and key messages that may not be being verbalised.
Flexibility and Spontaneity: Blanket approaches won’t always work
Trying to apply blanket approaches may not work, each person with dementia will have their own unique experience and symptoms of dementia, therefore a moment by moment responsive approach may be more helpful then the application of tools.
There is a lot of helpful information, tips and techniques to help you support the person with dementia, however, it is important to know that these may not work. Being that everyone is unique and each presentation of the disease of dementia is unique, even though there may be symptoms in common with each type of dementia.
The uniqueness of each person with dementia plays a significant role in the way that support might be best suited. So if you try something that’s recommended and it doesn’t work that’s ok, it might take a little creativity, working together with the person with dementia and seeking advice from others to find a way to provide support for the specific issue you are seeking help with.
Responding to changed expressions and communication
Understanding that there is an underlying cause to someone who starts to become distressed or express themselves in different ways then what you might have experienced of the person before. Because communication pathways can be inhibited by dementia a person will often express themselves non verbally to attempt to express and communicate something with those around them. There are a multitude of possible underlying causes for these expressions. They may be physical, psychological and or emotional. It’s important to not just see these expressions as a symptom of dementia but rather caused by an experience of life with dementia, the experience of some of the impacts of the disease rather than the disease itself. Although there are some functional changes that will can be caused by dementia such as repetitiveness and confusion as examples not all changes in a person’s expressions are symptoms of the disease.
Acknowledging your feelings
Acknowledge your feelings, they don’t just go away by being pushed aside or ignored. If we have trouble acknowledging our own feelings, we may then also have trouble acknowledging those of the person we are supporting. Speak with a counsellor or someone who you feel safe and comfortable to share your vulnerabilities with. Remembering that the person with dementia will also need an avenue for this.
Common feelings experienced by those supporting a person with dementia are guilt, grief and loss, anger, frustration and sadness. Joining a support group of people who are also supporting family members with dementia may help. Having people that can relate to and understand your experience can assist you to be more ok with the way you are feeling.
Stress reduction, remembering to ask for help
Remember that you and the person you are supporting are not alone in your journey, there is help available in a variety of different ways. View our services >>
There are support services available to you if you are in a family carer role, this can help free some time for you to spend solely on you. How long has it been since you have done something that was just for you?
Caring for a person with dementia isn’t just one way, there is much the person with dementia can contribute, many gifts they have to offer if we are open to receiving them.
Always include the person with dementia in any discussions and decisions that are about them
If you have established routines and ways of being and doing with the person you are supporting it will be beneficial for you to ensure you communicate these to the health professionals also participating in providing support. Consistency of approach can be very stabilising or someone receiving support and or the person with dementia particularly. Of utmost importance is for health professional to establish a connection with the person and with you. You can help with the facilitation of this relationship building.
Remembering your relationship with the person beyond your supporting role
It can be easy to lose the essence of a relationship if it becomes all about functional care and day to day tasks. Finding ways to nourish and nurture our relationship with the person you are supporting beyond this will add to the quality of life for both you and the person you are supporting.
Engaging with the person with dementia
We engage with people all the time but we rarely take time to explore how we do this, and where we can improve the way we connect with others. Think about how you engage with a person you have just met, or someone you are a little familiar with and also someone you know quite well / have a good relationship with. What are your approaches, do they differ and how and what are the skills you naturally use to engage and make a connection with them.
With people in our lives we consider them as they are in the moment. We alter and adjust ourselves to be able to respond to and connect with them.
The foundation to engaging a person with dementia is the same, it too is about making a connection and responding to them as they are in that moment whilst considering them as a whole person. It involves collaboration, empathising, entering their individual and shared world and supporting a decision making process. It also involves being congruent, respecting them as a unique and equal person, and taking the time to listen to their perspectives and beyond and through words for important messages. It is being ‘tuned into’ them and demonstrating this through our body language, words and actions. When you are engaged with the person with dementia you are expressing unconditional positive regard a foundational pillar to person-centred care and you demonstrate this a way that it is tangibly seen, heard and/or understood. It’s ‘being with’ a person.
This may all seem too simple and obvious, we often feel like engaging with a person with dementia is much more complicated. Unfortunately this over complication can start to unravel what we do naturally and begin to break the potential for real engagement and connection. There are certain things to consider with a person with dementia that we may not need to with others, however if we approach from this person-centred engaging foundation we will ‘naturally’ consider those things.
Communication with a person living with dementia
Communication pathways can change for the person with dementia depending on how the disease itself affects the brain. If verbal communication becomes difficult a person will attempt to communicate with you in alternative ways. It’s important to stay open to the various ways a person may express themselves and to look beyond the expression to the meaning, to what is being communicated.
A person with dementia may also have difficulties with processing information, it may take longer. Using shorter sentences and slowing down might help the person process what you are sharing with them. Be mindful not to speak in a way that diminishes their dignity and infantilises the person.
Creating a safe environment where the person feel supported and not rushed can help communication.
Supporting someone living with dementia
Continue being their friend and being there for them as you always have. You can help by ensuring they get time to nurture themselves, you may instigate more catch ups then you used to, or suggest things that can keep them engaged in things they love. Face any fears you may have around how to ‘be with’ or around a person with dementia and those caring for them.
The easiest way to know how to be with the person with dementia is to just simply be yourself, open, honest, authentic, congruent and genuine. Relationships are always changing as we know and this can be a change in the relationship that can be embraced and that might contribute a richness into your life and that of your friend who is living with dementia. In times of big change and life impacts when we need our friends and people we love to stay close, to journey alongside us as we navigate our way through the challenging times.
Be a good listener – small things can really help – prepare some food – go out for a meal, a movie, a walk. This will also help the person who is directly supporting your friend with dementia.
Things to avoid:
- Asking the person to remember things you know they can’t
- Testing their memory
- Testing their abilities
- Having expectations of them that they are unable to meet
- Blaming them or your feelings
- Outpacing – doing things at a pace that is too fast for the person with dementia. They may have difficulty processing information, slow down and go at a pace they can cope with.
Things to remember:
- Look after yourself
- Stay connected to family, friends and community
- Don’t ‘over do’ or the person with dementia
- Remember to see beyond the disabilities and the task and see the person – beyond dementia
- Reaching out and educating friends and family can help keep them connected and reduce any fears and uncertainty they might have
- Keep it simple
- Be clear in your communication
- Acknowledgement open and honest
- Be open to new expression and experiences
- Break down any limiting boxes that may have been created