Blog July 05, 2018

Supporting Families Living With Dementia

Molly Fogel, LCSW

Director of Educational and Social Services

Alzheimer’s Foundation of America


Aging professionals can be a great source of support for individuals living with dementia.  These professionals, including social workers, geriatric care managers, and nurses, wear many hats, working as advocates, mediators, counselors and so much more.   When a family is faced with a loved one living with a dementia related illness, there are so many feelings, needs, and concerns that arise.  Having a skilled and educated dementia care partner involved in the care team can make a world of difference.

To best support family members living with a loved one who has a dementia related illness, it is important to understand the family dynamics involved.  In addition to the individual showing changes as the disease progresses, the family can be equally impacted as the disease evolves.   An awareness of how the family is organized, including roles, rituals and boundaries can be helpful to promote the well-being of the family and the happiness of its members. Roles that are usually seen are similar to roles identified in families with substance use or chronic mental health, including enabler, hero, lost child, and mascot, are also seen in families dealing with chronic medical illness, such as Alzheimer’s disease.   More specifically, you may see the primary care giver or spouse serve as the enabler, helping the individual living with the illness  with everything to the point that the individual living with the illness doesn’t have to think for themselves, or use the capabilities that are still present.   The hero role can often be seen in the oldest child, the one who plays the martyr, who will take on everything for the primary caregiver.  They will seek to over achieve, and be overly responsible, and want to ensure that everyone knows it.  The lost child is the one choosing to stay off to the side, recognizing that for them, keeping a low profile is the best way to cope with what is happening.   By keeping to themselves, the person in this role often feels unimportant and unnecessary in the care process.   The mascot is often the youngest child, this can also be the grandchildren, seen as a distraction and source of amusement, to keep the family from focusing on the issue at hand.  This person remains sheltered and protected, often upsetting the other family members for not having as much responsibility.  Knowing who plays what role in each family, and how this keeps the family functioning, whether in an adaptive or maladaptive manner, can assist the care partner in understanding interventions to best assist the family, and work to map out the course of care with this family.

Another component to consider when informing yourself as a care partner, and understanding the family you are working with, is recognizing the boundaries that are present.  Boundaries include the limits a family sets with each other as well as with their outside world.  Getting a sense of whether or not the family is open and flexible to new experiences and relationships will be helpful as things continue to shift with the course of the dementia related illness.   Because there are so many unknowns with this illness, knowing where the family stands in terms of their willingness and flexibility is key. Understanding how a family protects each other and their “secrets” will also inform the care you provide as well as how to interact with the family and barriers that may arise.   Old family issues, challenging dynamics, and preexisting tensions can easily resurface, particularly when a family is strained by stress and illness.  Tensions become particularly high at these times when the family must come together to make key decisions as the disease progresses.  The other system to pay attention to is the sibling relationship, which can come with a long, varied history.  Issues with aging parents can bring out the best or the worst in sibling relationships.  We may find that old sibling rivalries for control or attention surface.

When learning a family, their systems, roles, and boundaries, the next component to learn will be how a family system communicates.  Are they good communicators?  Do they understand each other?  Do they truly listen to each other –  hearing the concerns, fears, stress, and emotion?   Are they willing to connect for the common cause and care of their loved one?  As care partners, a large part of the role with families can be gaining insight into this and helping the family to meet their own needs, as well as not lose sight of the individual living with dementia.

As with most of our work within the aging community, we know that strong communication skills are useful for meaningful engagement.  Teaching a family how to communicate their feelings effectively and listen to each other’s concerns can be challenging.  A great starting point is to check ourselves, and our own methods of communicating.  If we, as the care partner, are not effectively communicating, we are unable to best assist and attune ourselves to the families we are working with, as well as losing the opportunity to model healthy communication techniques.   So what does this mean?  Notice your tone of voice and rate at which you speak.  If a family is yelling, that doesn’t mean we need to match them.   We want to be able to harness our cool, calm, collected professional self, no matter how frustrated we may get, or how escalated a family can get.   Additionally, note your body language.   What does your body language say about you?   Are you open and willing to receive whatever is brought your way?  Do you make eye contact?  Does your body show that you are there and ready to listen?

When we think of listening, it’s important to recognize the difference between listening and hearing.   Hearing is like the teacher in Charlie Brown, where all that is heard is the noise, not the words.   Hearing is simply the act of noticing sound and takes no effort. Without any impairment, hearing simply happens. Listening, however, is something you consciously choose to do.  You need to want to listen, and recognize the families you are working with, want to be heard.  There are three main listening skills often discussed in terms of effective communication, including:

  1. Attending: Giving your physical and mental attention to another person
  2. Following: Engaged with eye contact. Use un-intrusive gestures i.e. such as nodding of your head, saying okay or asking an infrequent question
  3. Reflecting: Paraphrasing and empathizing

So if there is something happening in your world on a particular day, that will keep you from being your best self, from focusing and truly listening, it’s important for you, the care partner, to ask for help, or reschedule.  A good care partner knows their limits, when to take care of themselves, and when to ask for help.   By doing this, the care partner can model this to the family, teaching by example.

As part of the care team, we must recognize not only what is happening in the family, but making sure all that is swirling about, centers on the individual living with the illness.  After all, that is what brings this picture together.  Person centered care and collaboration needs to be a constant focus and reminder, anchoring the family to the individual living with the illness and reeling in the social worker when things seem to get a little lost.  Bringing it back to basics, back to the home, and the person living with the illness.  Care partners, and their many hats, can bring a lot to families in need of support while coping with stressors associated with dementia care.


About Alzheimer’s Foundation of America

The Alzheimer’s Foundation of America (AFA) is a non-profit organization that unites more than 2,600 member organizations nationwide in the goal of providing optimal care and services to individuals living with dementia, and to their caregivers and families. Its services include a national, toll-free helpline (866-232-8484) staffed by licensed social workers, the National Memory Screening Program, educational conferences and materials, and “AFA Partners in Care” dementia care training for healthcare professionals. For more information about AFA, call 866-232-8484, visit, follow us on Twitter, or connect with us on Facebook or LinkedIn.