Caring for individuals with dementia requires time, patience, and specialized knowledge. As the condition progresses, families often turn to hospice care to ensure their loved ones receive the highest quality of support in their final stages.
In this post, we’ll explore the importance of providing quality hospice care for dementia patients, with tips for family caregivers on providing end-of-life care to a loved one.
Dementia is a neurological condition characterized by a gradual decline in cognitive abilities, such as memory, thinking, and reasoning.
Early signs of dementia may include:
- Memory loss
- Asking questions repetitively
- Confusion over place and time
- Wandering off or getting lost
- Difficulty concentrating
- Finding familiar daily tasks more challenging
- Struggling to follow conversations
- Mood and personality changes
The condition advances in stages and can eventually reach the point where it significantly affects a person’s daily functioning and behavior.
Dementia is most commonly associated with older adults and is often caused by Alzheimer’s disease. Although, it can also occur in younger people due to certain medical conditions or genetic factors.
Dementia and Family Relationships
Dementia can have a considerable impact on clients and their families. For many, the condition can drastically alter the dynamics of family relationships.
For the client, dementia can lead to feelings of frustration, fear, and isolation. They may struggle to remember important details or recognize familiar faces. Once simple tasks also become increasingly challenging, leading to a loss of independence.
These changes in ability may lead to a caregiver needing to assist with activities of daily living. This caregiver is often a spouse, child, or another close family member in the beginning. This change in care dynamics can be difficult for some clients to accept.
The impact on family members is also significant. Looking after a loved one with dementia is challenging, especially as their condition worsens.
Witnessing a spouse, parent, or grandparent decline can be emotionally and mentally taxing. Let alone when you add on the strain of providing constant care and balancing other responsibilities. Being a family caregiver can lead to increased stress and burnout.
Dementia can also disrupt communication between family members. The condition can cause clients to have difficulty remembering things and expressing themselves, leading to frustration and misunderstandings.
But despite the challenges, maintaining strong relationships is crucial for the client’s and family members’ well-being. The most important thing you can do is support each other as you navigate the difficulties of dementia together.
Benefits of Hospice Care
As the condition worsens and dementia clients approach end-of-life, family caregivers may struggle to support a loved one without assistance. This struggle is why many people turn to hospice care.
Hospice care was traditionally associated with cancer or other terminal illnesses. But an increasing number of families are starting to rely on hospice care for dementia patients too. A recent study shows that dementia clients in hospice are more likely to receive excellent care and have their anxiety and sadness managed than those not in hospice.
Many families prefer in-home hospice care rather than a care facility for clients with dementia. The familiar home setting can be comforting for those with severe memory loss.
Home hospice care involves regular visits by professionals who help care for a person’s physical, emotional, social, and spiritual needs. The team may include doctors, nurses, home hospice aides, social workers, chaplains, and bereavement counselors.
Benefits of hospice care include:
- Comfort and familiarity in the home environment
- Establishment of daily routines
- Emotional and psychological support for clients and families
- Enhanced quality of life in final months
- Personalized care plan
- Respite for family caregivers
Providing End-Of-Life Care for Clients with Dementia
Hospice care helps bring comfort and maintain a client’s well-being in the final stages of dementia. But even with this additional support, family caregivers still play a vital role in caring for a loved one with dementia until the end.
Below are some tips for providing quality end-of-life care for a loved one.
Creating a Supportive Environment
When a person with dementia remains in their home, creating a safe and supportive environment is essential. The physical environment can make a big difference for those living with dementia. Simple changes can make their life significantly easier.
Tips for creating a dementia-friendly home environment:
- Remove clutter and make frequently-used items easy to see
- Use contrasting colors to draw attention to things
- Leave inside doors open to stop confusion
- Add simple signs and labels around the house
- Put out photos or keepsakes that evoke positive memories
- Promote a calm and peaceful atmosphere
Developing a Care Plan
Dementia is a condition that affects every person differently. So a care plan needs to be personalized and address the client’s unique needs.
Care plans are a collaboration between the individual with dementia, family members, healthcare professionals, and other care team members. The plan will address cognitive ability, health conditions, support needs, and more.
In a dementia care plan, including information about the client’s personality and preferences is essential. The client and their family should create this plan early on.
The document can be in first person and should include:
- A biography
- Personality traits
- Hobbies and interests
- Family and friends
- Likes and dislikes
- Food and drink preferences
- Environment preferences
- Spiritual beliefs
This information is helpful for new caregivers or healthcare professionals involved in the client’s hospice care during the later stages of the condition. It gives the client a voice when they can no longer speak for themselves.
Managing Symptoms and Pain
While dementia is primarily a cognitive condition, it can also cause physical symptoms and pain. Between 50% and 80% of clients with moderate to severe dementia experience pain daily. This pain is most commonly chronic but may also be previous injuries flaring up or other untreated medical conditions.
Unfortunately, pain isn’t always recognized due to dementia clients not being able to express themselves effectively.
As a caregiver, it’s vital to watch for any signs of discomfort or pain. Look for changes in breathing, body language, groans, strained facial expressions, or other signs.
You can then talk with the client’s care team about ways to manage the pain. Hospice care services include physical care in the form of drugs, massage therapy, physical therapy, and other palliative treatments.
Communication and Connection
During the later stages of dementia, verbal communication can be challenging. But communication is essential for understanding people’s needs, wishes, and emotions. It’s also key in maintaining meaningful connections.
As a caregiver, you must remain patient and alter your communication techniques to communicate meaningfully together.
Ways to communicate with someone with dementia:
- Speak clearly and slowly and use short sentences
- Give them simple choices rather than asking open-ended questions
- Allow them plenty of time to respond
- Make sure there’s not too much background noise
- Try non-verbal techniques like pointing or gestures
- Use visual prompts like photo cue cards
- Try not to patronize them
- Make sure your body language is open and relaxed
- Engage in meaningful activities together
Discussing end-of-life plans is challenging and emotionally taxing for anyone, but especially for those with dementia, since it needs to be done early on.
You must discuss an end-of-life plan while the client can still understand and communicate. This planning can be an “advance care directive”, an end-of-life tool that allows a person to legally choose the type of care they want.
Factors to consider in this directive include:
- Who would they like around them?
- Spiritual or religious beliefs and how these should be taken into account
- Do they want any life-sustaining treatments?
- Do they want to be resuscitated?
- Funeral and burial plans
Self-Care for Caregivers
As a family caregiver, you may spend so much time and energy caring for your loved one that you forget to look after yourself. A lack of self-care can lead to burnout, which isn’t helpful for anyone.
Taking care of yourself, physically and mentally, is one of the most vital things you can do as a caregiver.
Ways to look after yourself as a caregiver:
- Take time for yourself
- Spend time with other friends and family members not involved in caretaking
- Keep up with your hobbies and interests
- Cook healthy meals
- Get outside into nature
Respite Care and Support Services
Another way to look after yourself as a caregiver is to make the most of respite care and support services. Using these services can help prevent caregiver fatigue and burnout.
A respite care service can provide a temporary break for you as a family caregiver. This break can range from a few hours of coverage to regular and ongoing support.
Joining a caregiver’s support group or talking to a mental health professional are also great ways to help deal with your emotions during this difficult time.
Hospice care offers emotional and spiritual support services to family members, as well as the client with dementia.
Resources and Organizations
Many places offer additional resources and support for those with dementia and their families.
These resources include:
- Your local Area Agency on Aging
- Your local chapter of the Alzheimer’s Association
- Alzheimer’s Foundation of America
- The National Institute on Aging
Quality Hospice Care for Dementia Patients at Providence
Providence Home Care is a fully-certified home care agency based in Oklahoma City offering in-home hospice care for clients with dementia. We always treat our clients with the dignity, compassion, and respect they deserve. Contact us today to find out more about our services.