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Dementia 360: How Dementia Affects Primary Caregivers and Their Families

A diagnosis of dementia does more than change the life of the person affected. It also has a huge effect on family, friends and loved ones. It can greatly change family relationships and expectations, and can cause difficulty and stress in the lives of everyone involved. In fact, families are sometimes called “the invisible patients of dementia.”

Terry Tumpane, Executive Director at Bridges® at Norwalk in Norwalk, CT, says, “Family and friends have to deal with the decline of their loved one and the issues that arise from that, but also with their own unique feelings, emotions and difficulties.”

Because family members can be unprepared for how changes affect them, they often won’t take steps to address them. “Usually it’s because they think they can power through it, or sometimes they feel guilty because the disease isn’t happening to them,” Tumpane adds. “But it’s essential for everyone involved to understand the consequences of the disease, the potential risks and the progression so everyone can prepare for what is to come. The sooner you can develop a plan, the less painful and stressful your lives are likely to be.”

The Effects of Dementia on Caregivers and Families

The entire family is affected when there’s a dementia diagnosis, but it has the biggest effect on caregivers. Primary caregivers have been referred to as “the second victims of dementia” due to the physical, emotional and mental toll caring for a loved one takes on them. Here are some of the largest risks of caregiving:

  • Higher emotional distress. Depression, anxiety, anger issues – all these and more can result from a caregiving role. These symptoms can all be rolled up under the term “caregiver stress,” which is one of the most critical issues to address, because all of the symptoms listed below stem from complications related to this.
  • Declining physical health. Many caregivers report developing health issues and having worse health overall when compared to non-caregivers. Cardiovascular problems, poor sleep, slower recovery from wounds or sickness and lower immunity are some of the most common. Caregivers have also reported that chronic health issues such as diabetes and arthritis worsen after taking on a caregiving role.
  • Becoming socially isolated. Even if the caregiver is a social person, it’s very easy for them to begin bowing out of events and shying away from friends and others because of time limitations, stress or just plain apathy. Over time, this results in a feeling of social isolation and loneliness.
  • Increasing financial difficulty. Caring for a loved one with dementia can cause financial hardship. Although insurance can help, there are a variety of direct and indirect costs that occur and aren’t covered by any plan. Tests, medicine, physician care, home nursing care are all examples of direct costs. Indirect costs refer to a family’s loss of earnings that happen if a caregiver was in the workforce and has to quit or negotiate a reduced workload.

While individuals’ reactions vary, here are some of the ways family and close friends can be affected by a dementia diagnosis:

  • Experiencing grief, sadness and anxiety about what’s happening to their loved one
  • Feeling guilty for their emotions, especially if they’re embarrassed, bored or irritated at their loved one
  • Withdrawing from visits because they don’t know what to say or how to act
  • Have incorrect assumptions about what their loved one can continue to do or how the disease will progress

Tips For Coping With a Dementia Diagnosis

If your loved one or close friend has been diagnosed with dementia, here are some tips for helping deal with the fallout in a beneficial way:

  • Find a support group or therapist. Talking to someone is never a bad idea. A therapist can assist with working through emotional issues and prescribing medication if necessary. A support group can help you connect with others who are going through similar experiences or help you find resources.
  • Stay involved in the life of your loved one. This will provide much-needed emotional support to the senior and can strengthen all your relationships throughout the family.
  • Educate yourself about the disease. By knowing how this disease will affect your loved one, you’ll be able to prepare yourself for what’s ahead. Taking away the uncertainty can allow you to provide support at this difficult time.
  • Accept and allow your feelings. You may be feeling a variety of feelings: denial, anger, apathy and more. Acknowledge your feelings and give yourself – and other family members – time to work through them in your own way.
  • Communicate, communicate, communicate. And then communicate some more. Being open and honest about what’s happening will help everyone move forward through this journey.

If you would like more information about dementia and how it affects primary caregivers and their families, contact us at 203.523.0510.

Compassionate Care for All Stages of Memory Loss

Bridges® by EPOCH at Norwalk provides assisted living memory care that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia or memory impairment, we’ve created a wellness-focused lifestyle that promotes dignity and individual preferences. Our memory care professionals receive specialized and ongoing training designed to help residents maximize their independence in a secure, calm environment – making a truly positive impact on the lives of our residents each and every day.

Personalized Services

Bridges® by EPOCH’s services are designed to recognize and adapt to the unique challenges and individuality of each resident, while ensuring comfort and safety. We believe in a full-service approach to care and provide a high level of personalized attention for every stage of memory loss. At Bridges® by EPOCH at Norwalk, our residents have it all for one simple monthly fee.

Community Amenities

Within a beautiful residential design, Bridges® by EPOCH at Norwalk provides everything residents with Alzheimer’s disease and other dementias need to enjoy comfort, familiarity and security. Soft colors, directional cues, aromatherapy and interactive life stations create a peaceful and secure environment where residents feel at home.

Call us today at 203.523.0510 to learn more about Bridges® by EPOCH at Norwalk or to schedule a personal tour.

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