If someone close to you has ever been affected by dementia, you may know how devastating this condition can be- not only to the person themselves, but also to the family unit. Healthcare professionals such as therapists and nurses deal with these complicated family circumstances as well, when helping caregivers cope with dementia. To support caregivers of people with dementia as best you can, first we must understand what is going on…behind the scenes.
The effect of dementia on the family unit
Did you know that the family members of a person with dementia are often called the ‘invisible second patients’? This speaks volumes about how all-encompassing the diagnosis of dementia can be on the family member themselves. Caring and providing support to these family members and caregivers is critical for the well-being of the person with dementia- and can make the entire process change from an immense psychological burden- to much more positive and empowering experience.
It goes without saying that the family are the main social and physical help for people with dementia. This deserves so much recognition, because it leads to much less patients entering long term care, generally indicates a better quality of life for the person themselves, and has a massive impact on the economy. With all these people being cared for at home, however, the impact on the family is intense.
Depending on the stage and the type of dementia, the person may also have their own additional challenges- like personality changes, agitation, disruptive or hard-to-understand behaviors, or even aggression.
This situation is rife for family conflict. Members of the family might disagree on care, butt heads over how to care for the person, and fight over finances. But what makes the care of a person with dementia more high conflict than other situations?
There is, of course, the physical workload of providing more care to a person. As the dementia progresses, the person will require more and more assistance with daily tasks, may need increased levels of supervision for activities they could previously complete independently.
Families can also experience financial strain– as many primary caregivers must give up their work, or cut back on hours in order to be able to provide care to their loved one. This can create further stress in the form of financial hardship. Getting paid help into the home is an option to ease some of the physical workload but again contribute to the financial issues a family may have.
From an emotional perspective, a lot of conflict can arise because of different coping strategies. Watching your mother or father change, become less independent, or even forget your own name can be devastating. Many caregivers are dealing with a massive feeling of grief and loss, even while the person they grieve is right there in front of them. This sadness and disappointment is pervasive, and caregivers may feel depressed- which of course, will impair their ability to function at a higher level and care for their family member.
Some caregivers, like children of the person with dementia, may feel irrational anger– this is the person who took care of them, and now they are forgetful and need constant reassurance and cues to get anything done. This can be maddening to a caregiver who is sad and stressed and not coping well with the situation- particularly if they do not understand how to communicate with their person.
Frustration at the situation, and all its complex requirements, can be strongly felt by caregiver and family members and cause them to lash out at each other. Most people have their own distinct coping style, or may not be coping well with the idea of a loved one with a progressive condition. This can be heightened if some family members are seen to not be pulling their weight, or if some live far away, or if there is a disagreement as to the direction of care.
Guilt also looms large in this equation. Families can feel guilty at their own sadness, anger, or frustration toward their loved one; they may feel guilt for seeking outside help; and they certainly feel guilty if making the decision to move their person into a care facility. This guilt complicates the situation even further, and distorts the other emotional responses and coping strategies.
Although these difficult and stressful situations can arise, it is really important to understand that conflict and grief are not the default settings for caregivers of those with dementia. Many caregivers can have a rewarding and positive experience when caring for a loved one, and I personally have known families who have cherished this time with their family member.
Although the ‘burdens’ of caregiving are more widely known, caring can also have many positive effects. According to an article by Sanders (2005), between 55% and 90% of caregivers have positive experiences, such as enjoying togetherness, sharing activities, feeling a reciprocal bond, spiritual and personal growth, increased faith, and feelings of accomplishment.
Motivations can also impact the outcome: feeling more positively toward the act of caregiving has been associated with greater health and wellness, and higher general satisfaction.
As a therapist of a nurse working in an inpatient setting, understanding these situational challenges is absolutely essential. It will help inform how to proceed, what questions to ask, and what support to offer caregivers when working with a person with dementia. Keep in mind- working with your patient is the tip of the iceberg, in terms of their long term care!
How can we best support caregivers of those with dementia?
Many of the family conflicts may arise from a lack of knowledge as to what is happening and how to progress with the person with dementia. By clearly explaining what kind of dementia their loved one has, and explaining what they can expect, a lot of myths may be able to be challenged. Many lay people will not realize that dementia is an ‘umbrella term’ that encompasses many presentations, each of which may have a different progression.
It will be vital to communicate to the family how their loved one will progress. Alzheimer’s type dementia has a linear downward loss of function, whereas vascular dementia will present as a stepwise loss of function. Personality changes will be most dramatic with a frontotemporal dementia, which is also complicated by a younger age of onset. Lewy Body dementia can present with hallucinations or parkinsonism- both of which impair communication, and will be very important for the family to understand.
Providing this clarity to families, along with some of the next tools, may help them feel more able to cope with the challenges and the conflict.
See the person inside; understand their best ability to function
The family member or the caregiver often feels that they have “lost” their loved one, and is grieving their loss even with the person physically beside them. We can help support our families and caregivers by teaching them about the person inside.
Educating families about the massive communication breakdown that occurs as part of dementia is paramount to a successful ongoing relationship. If a caregiver is mourning the loss of their mother, who used to always share stories and give advice but now does not seem to remember anyone’s name and sometimes does not recognize their own family members- it is easy to see why the caregiver could feel like they ‘lost’ the,’. Instead, support the caregivers to connect with their loved one through what abilities and skills remain- no matter what the level of dementia. You may teach the caregiver to reminisce about old stories, to enjoy relieving experiences through a photo album, or to companionably watch grandchildren together and gently elicit advice on their behavior.
We discuss exactly how to communicate this way in our short webinar, “Settled and Secure: Addressing Challenging Behaviors with Dementia”. Check it out!
By empowering your caregiver to communicate with their loved one in this way, you are fostering a stronger and more satisfying relationship. This is going to have knock-on effects to overall satisfaction and happiness and lessen the sense of burden and stress. All family members should be educated in this way, so that they are not trying to ‘keep the person at their current stage, or place undue stress on them by asking questions or becoming frustrated. If the family as a unit feel more empowered in their own relationships with the person, inter-familial conflict can drop.
How to communicate with their loved one
Communication is key to success in all aspects. Both communicating with their loved one, and communicating within the family unit- breakdowns and barriers in communication will cause the most strife and strain.
Communicating with the person with dementia is multi-faceted- to learn more about boosting your communication with someone with dementia, read this article!
Communication within the family is also paramount. Make sure that everyone is continuing to talk to one another, more regularly than you may think is necessary! Schedule regular meetings, conference calls, or family events; discuss what ‘worked’ with the person with dementia, and what had an adverse effect, and keep a running list of acceptable and pleasurable topics; and form a schedule that will work best for the person. Operating within this framework is going to lead to the most success for the family- which can again decrease the amount of inter familial conflict experienced.
How to communicate with each other
We are all more likely to be short, or less patient with our own family members. Expecting this, and encouraging the family to approach each other with compassion and an open heart is important. As mentioned before, everyone will cope with a progressive illness such as dementia in a different way- and being as empathetic as possible to this will be helpful.
Get outside help
Owing to the amount of physical help, supervision, and other assistance that the person with dementia will need, the family may need to hire outside help to ease some of the burden. Bringing in their right person to help with your loved one can also add a much needed dynamic- the hired caregivers may not have the emotionality that the family experience, and can educate and support the family on good techniques or preferred activities that they find with the person with dementia. It can also provide a supportive and social interaction for the caregiver.
There may be a transitional phase wherein the person with dementia will need a level of help greater than the family can provide. Transferring a loved one to a care facility, as mentioned before, is an emotional minefield. Guilt and trauma are expected, and this friction can also lead to what is known as “transfer trauma’ for the person with dementia.
Transfer trauma describes the high level of stress that a person with dementia can experience, when moving from one home to another. It will be more common in people at an earlier stage of dementia, or if they are moving from their lifelong home into a facility.
This can be temporary, as the person settles in and finds a new community. However, if this transfer is not handled well, there can be other complications such as isolation; depression; behavioral challenges.
As a therapist or nurse, you may be meeting the family during this difficult time. Perhaps you were caring for their loved on who fell ill or was in in-patient care, and with their new level of need, the family are unable to care for them. Or maybe, you are a clinician in the inpatient subacute facility that they are moving their mother/father/husband/sibling in to. Having an acute sense of the conflicts that may arise can help you best support the person, and their family.
Transfer trauma can be just as real for the caregiver- families may experience stress and guilt. This might be compounded by any insight their loved one has into the situation, perhaps asking them “why have you done this to me?”. Our role as clinicians here can be powerful- enabling communication and healthy emotional exchange between the family and their loved one.
Community support at a wider level is also going to be vital for us as clinicians to be aware of, and empower families and caregivers of those with dementia to seek out. Both live and online support groups are available, as well as counselors, patient advocates, and websites with lots of useful information for carers.
Here are a few links that list live and online support groups that you can draw attention to:
Family conflict is almost inevitable when trying to cope with caring for a person with dementia. Many complicated factors are at play, and this condition is multi-faceted. For clinicians or caregivers, being aware of these issues and being ready to provide support and understanding is going to be one of the most empowering things we can do. We want to set both our caregivers and our patients up for success at every level!
We talk much more about communication techniques, coping, and boosting your skills in connecting with your person and family members in our fantastic one-hour webinar, ‘Settled and Secure: addressing ‘challenging’ behaviors associated with dementia’. Check it out, or get our free Care Approaches cheat sheet right here!
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