Why is family support important for people living with dementia?
Familiarity with people, places and routines helps us to feel safe. When any aspect of this familiarity is removed, it can create negative emotions, such as fear, confusion, frustration, or sadness. This blog explores why continued family support is important for people living with dementia, with tips on how we can all help to keep families and loved ones connected.
In this blog, we use the word family to refer to the people that matter most to the person living with dementia. Those people may be connected through biology, marriage, partnership, friendship or community. Family in this context has no definition or boundary, and encompasses the people who are important to the person.
We know that living with dementia can affect a person’s ability to recognise faces, or to recall someone by their name. This can be as frustrating and distressing for the person as it is for their family and friends. It can result in family members feeling uncomfortable or embarrassed. If this happens, it can be difficult to remember that the relationship with the person still matters.
We all need contact and connection to thrive as human beings. This becomes more important for a person living with dementia, as the person may need the support of others to remain connected. Being connected to others, being part of a family, helps shape our identity and our sense of self. Losing that connection, feeling disconnected from family, risks a person losing their sense of who they are, and possibly even a sense of control over what happens to and around them.
Family contact and presence can help the person to hold onto who they are. But what can you do when the person doesn’t recognise someone as family?
Knowing how to respond can be confusing, as you want to maintain the person’s trust, without lying to them. If the person misidentifies you, offer your name and how you are connected to them without challenge. If, by offering the correct information, you risk distressing the person, don’t correct them. Instead, talk about the person they recall; share photographs, memories and stories where you can. You may resemble someone they love, either by the way you look or how they make you feel. Keep a journal of the stories to share back to the person and with others.
If the person doesn’t recognise you at all, offer your company anew. Share what you love and admire about the person, talk about what is happening in the community, or ask the person if you can share some quiet time together.
Tip: Go with the flow. The person may not be able to recall a name, but will recognise the emotions you share during your time together.
Helping to make the right decision
We make decisions every day. Whilst we often give little thought to the process of decision making, the outcome of the process (the decisions we make) can say so much about who we are, and what matters most to us. Those decisions may be about personal matters, such as who we want to spend our time with, or what we want to wear. They may be about expressing our values, such as how we express our sexuality, our spirituality, or our concerns for our local community. For some people living with dementia, decision making may be made difficult by changes that affect their memory, thinking or communication skills. When this happens, the person may need support from others to help with the decision process. The person helping with those decisions needs to know as much as possible about the person, to make sure that every decision is right for them. Family, friends and trusted carers may all have something to contribute to support decision making and should be encouraged to share what they know when it is appropriate.
No matter who else may be involved, it is important that the person and their wishes remain at the heart of all decision making. Family and carers should do all that they can to support the person to express and fulfil their wishes, preferences and values.
Tip: Knowing as much as we can about a person doesn’t just help with the ‘big decisions’, such as those that affect a person’s health and welfare. Sometimes, it’s the decisions that go unnoticed, the ones about the really little things, that can make a difference to a person’s quality of life. For example, whether to wear perfume, and what perfume. Maybe even the colour of the toast. What to eat for a workday breakfast, and what to have as a once-a-week indulgence. All of these are important, as it’s these little things happening around us every day that make our lives worthwhile.
Giving and receiving support
No matter who we are, where or how we live, we might all rely on the support of other people from time to time. Giving and receiving support is part of what it is to be human; it is an essential part of living and belonging to community, no matter what form that community takes. A simple example may be making a cake for a neighbour, or teaching someone how to knit. These may seem like small acts, but they can be essential skills that have helped a person to be seen as a valued and welcome part of the community.
Being part of family and community is as important for people living with dementia as it is to any other person. Too often, it is assumed that a person with dementia will become a passive recipient in any exchange. This is not true, and with sensitive planning and support, a person can contribute to the care and welfare of others.
Family and friends often know the most about how a person has contributed in the past, and will most likely have been the main recipients and beneficiaries of that support. Sharing the memories and experiences of that support can help the person to regain that sense of value and worth. A person’s skills and expertise can only be valued once they are known. Sharing what different family and friends value about the person, and what they learned from them, with others involved in their care can be a way to recognise those skills.
Tip: It may help to make a visual map or a list of the person’s skills, interests, and abilities. From that map or list, work with the person to identify opportunities for them to make the most of those skills. If the person was a fantastic baker, for example, but can no longer bake independently, offer support with some of the tasks. Or share a cake you have baked and let the person know that they taught you.
For some people living with dementia, their needs are such that they can only be met in a communal setting, such as a residential or nursing home. The move to a new home or care setting, however well designed or supportive that setting may be, can be traumatic for the person. At such times, it is more important than ever that the person remains connected to their family and community, and receives support from them.
Family may be able to offer and provide essential practical support, such as being a familiar face at mealtimes. Family can also provide invaluable emotional support, perhaps by simply being there so that the person feels safe and confident enough to adapt to their new surroundings.
Being there matters. It matters to the person, especially if they no longer use words to communicate, as it ensures that who they are and what matters to them is known by the people that surround them every day. It matters to the family and friends, as their identity has and continues to be shaped by the person, no matter where they live or how they receive support. It matters to paid carers, as it offers them help and guidance to ensure that they are providing the best support.
Tip: Remember that family can mean anyone that matters to the person.
HammondCare Dementia Support provides free, open access resources for a range of audiences, including people with dementia, family carers, and care and support teams. Browse our free resources here.
HammondCare Dementia Support also has a subscription service for care teams who are supporting a person living with dementia. Subscribers have access to a digital resource library, an e-learning suite and care consultant support via Live Chat (10am – 8pm) or phone/video consultation (10am – 4pm). Get in touch for more information about how we can support your service.