What do you do when a family member refuses care?

By 28th September, 2023 Care, Family Related Matters, Help Comments Off

While striving to provide the best possible support for your loved one, you are faced with many challenges. One of those difficult topics is: what do you do when they refuse care? It’s an issue that many families grapple with, so let’s try and unravel the complexities of the situation and offer some guidance on navigating these uncharted waters.

 

The different types of dementia

 

Dementia is a broad term that encompasses various conditions, each with its own distinct characteristics. While Alzheimer’s disease is perhaps the most well-known form of dementia, there are others worth exploring.

 

One such type is vascular dementia, which occurs as a result of impaired blood flow to the brain. This can be caused by conditions like stroke or small vessel disease. Vascular dementia often presents with difficulties in thinking, problem-solving, and memory.

 

Another type is Lewy body dementia (LBD), characterized by the presence of abnormal protein deposits called Lewy bodies in the brain. LBD can lead to fluctuations in attention and alertness, visual hallucinations, and movement problems akin to Parkinson’s disease.

 

Frontotemporal dementia (FTD) primarily affects the frontal and temporal lobes of the brain. It causes changes in behaviour, personality shifts, language impairments, and challenges with executive functions like decision-making.

 

These are just a few examples among many other forms of dementia such as mixed dementia (a combination of different types) or less common variants like Creutzfeldt-Jakob disease or Huntington’s disease.

 

Understanding these distinctions helps caregivers tailor their approach to meet specific needs associated with each type of dementia. By recognising individual symptoms and patterns unique to each form of this complex condition, appropriate care strategies can be implemented for optimal support.

 

The effects of refusing care on the patient

 

When a dementia patient refuses care, it can have significant effects on their well-being and overall quality of life. Refusing care may lead to an increased risk of physical health issues. For example, if the patient refuses assistance with activities of daily living such as bathing or dressing, they may become more prone to infections or injuries. Additionally, refusing medication or medical treatments can exacerbate existing health conditions.

 

Furthermore, refusing care can also have emotional and psychological consequences for the patient. They may feel frustrated or overwhelmed by their declining abilities and independence. This could result in feelings of sadness, anger, or anxiety. Moreover, when a dementia patient refuses care, it puts additional strain on their caregivers and loved ones who are trying to provide support.

 

In some cases, family members may experience guilt or helplessness when faced with a loved one’s refusal of necessary care. It is important for families to seek guidance from healthcare professionals who specialise in dementia caregiving strategies. By understanding how to approach these situations with compassion and patience, families can better navigate the challenges that arise when a dementia patient refuses care.

 

Overall, the effects of refusing care on a dementia patient cannot be underestimated.

It is crucial for caregivers and family members to address this issue promptly, seek professional advice, and find ways to ensure the safety and well-being of your loved one.

By working together with healthcare professionals, you can develop strategies

to overcome these obstacles and provide optimum support or individuals living with dementia.

 

The family’s role in care

 

The family plays a crucial role in the care of a dementia patient. When a loved one refuses care, it can be challenging and emotionally distressing for everyone involved. However, there are steps you can take to navigate this difficult situation.

 

Communication is key. It’s important to openly discuss your concerns with the family and with the patient. This allows everyone to understand each other’s perspectives and find common ground.

 

Empathy is also essential when dealing with a loved one who refuses care. Put yourself in their shoes and try to understand why they may be resistant. Dementia often affects judgment and reasoning abilities, so it’s crucial to approach with patience and compassion.

 

It may be a good idea at this stage to seek professional help. Consultation with healthcare professionals or joining support groups can provide guidance on how to handle specific situations related to refusing care.

 

Additionally, involving the dementia patient in decision-making processes can empower them and give them a sense of control over their own lives. Encourage them to express their preferences whenever possible while still ensuring their safety and well-being.

 

Self-care is vital for family members caring for someone with dementia. It’s easy to become overwhelmed or burnt out, but taking breaks and asking for assistance from other family members or hired caregivers can prevent caregiver fatigue.

 

Caring for a loved one with dementia can be incredibly challenging, especially when they refuse care. It’s important to remember that their refusal is not personal and is often a result of their cognitive decline. By understanding the different types of dementia and the effects of refusing care on the patient, you can approach the situation with empathy and patience.

 

When faced with a refusal of care, it’s crucial to involve healthcare professionals who specialise in dementia. They can provide guidance and support in developing strategies tailored to your loved one’s unique needs. Additionally, reaching out to support groups or organisations dedicated to dementia care can offer valuable resources and reassurance.

 

Family members play a vital role in caregiving for individuals with dementia. It’s essential to communicate openly and honestly with other family members about your loved one’s condition and work together as a team. Consider attending educational programs or workshops on managing difficult behaviours associated with dementia; this knowledge will empower you to provide better care for your loved one.

 

Remember that self-care is equally important in this journey. Taking breaks, seeking respite services, or leaning on friends and extended family for support can help prevent burnout while ensuring that you are able to continue providing quality care for your loved one.

 

Caring for someone with dementia who refuses care requires patience, understanding, and adaptability. While it may feel overwhelming at times, by arming yourself with knowledge about different types of dementia, involving healthcare professionals early on, working together as a family unit, and prioritising self-care along the way – you can navigate this difficult road more effectively while keeping your loved one’s well-being at heart.

 

Remember: You are not alone in this journey! Reach out for help whenever needed because there are people ready to assist you every step of the way.

Preparing for the next step

By 29th July, 2020 Care, Care Home, Family Related Matters, Help Comments Off

Taking the decision for a loved one to move to a care home can be a scary and upsetting thought. It is often filled with guilt, you may have spent years caring for them and so it is understandable that taking a step back from that role can be very challenging. Ensure you get support from your friends, family and the care team who will be stepping in. You can still be involved in their care, and work with the new team to ensure your loved one is happy and settled in their new setting.

 

None of us want to admit we can’t cope any more or that we need more support. As we get older it is inevitable that we might need more care and it is important to ask for this help when you need it rather than wait until something happens and you have no choice in the matter.

 

By creating a plan and taking time to visit different care homes or looking at the different care options you can have control over the decision making. This will give you and your family time to prepare for the next step and also in a lot of cases care homes and care teams may have a waiting list.

 

Here are some tips to help you in the decision-making process if you feel a care home is the next step:

 

  1. Involve the person in the decision

Although you may feel that your loved one does not have the metal capacity to make the decision in their care, it is important to try and involve them in the process. If they are no longer able to communicate you might be able to see different reactions as you tour around different homes which may help guide your decision and also make the transition easier for your loved one.

 

Due to COVID it might not be possible to have a tour of the care home right now, however the majority have websites, so take a look at the photos on their site, read about their ethos and how they care for their residents. Arrange a video call with the care home manager to ask all the questions you have and to get a feel of how the home is run and the activities that might appeal to your loved one.

 

Perhaps there is an opportunity for your loved one to join in some activities each week prior to the move so they can get to know some of the residents and become familiar with the home. This would make the transition feel less daunting for everyone involved.

 

  1. Choosing the right home

This is the big one, and no doubt the most daunting decision ahead of you. There are lots of resources available on the internet to help you make that decision, but I would draw your attention to Age UK. They have a video to help: https://www.ageuk.org.uk/information-advice/care/arranging-care/care-homes/help-finding-care-home/

 

They also have a list of questions that you might want to include during the process which you can find here: https://www.ageuk.org.uk/information-advice/care/arranging-care/care-homes/choosing-care-home/

It also has a handy downloadable checklist. By having a checklist and a standard set of questions for each home it will give you a good basis for comparison.

 

Choosing a home is very much a personal thing, so try to get as much of a feel for daily life as you can, ask about routine and activities, outside space, activities available outside of the home and see if you can picture your loved one enjoying themselves there. If you do get the opportunity to have a tour of the home get a feel for the staff, are they interested in the residents, are they caring, does the home feel welcoming? It may be difficult to do this in current circumstances, however if you are planning in advance perhaps ask to be contacted once they are doing show arounds again.

 

  1. Once you have chosen

At this stage the care home should arrange to come and meet your loved one or invite them to the home to meet with some of the team. As I mentioned earlier, if you have some time before the move, it might be nice to arrange a few afternoons or mornings where your loved one spends time at the home getting involved in some of their activities.

 

During their visits try to give the home as much information about your loved one as possible, this includes how and where they grew up, family, partner, work, interests, hobbies, achievements, music, films. On the Dementia website you could go through the process of creating your loved one’s life story. This is a lovely thing to do together, but don’t try doing it all in one sitting, break it into topics and collect photos to go with the stories. Spending time going through old photos reminiscing is something we love to do at Grosvenor Lodge and having life stories helps us to start the conversation with our residents.

 

  1. Moving Day

Try to reduce anxieties and pick a time in the day which you feel will work best for your loved one. If they feel reluctant you could could start with a shorter respite stay to see how they get on.

 

Make their room homely, put up photographs of loved ones and ornaments and sentimental pieces from home around the room. Finding the right time to leave can be hard, however the care home will be very experienced in this, so talk to them and discuss when they feel is the best time.

 

Let your loved one know you are leaving and when you plan to return and feel free to call the home and check how they are settling in.

 

  1. Settling in

Some care homes ask friends and families not to visit in the first week so they can get your loved one settled. This can feel difficult, however you can phone and check how it is going. When you do visit, encourage your loved one to develop relationships with the other residents and get involved in activities. We are always happy to include visitors in our activities – if you have a skill or hobby you could even host your own activity session.

 

If you would like any advice about introducing a loved one to our care home, please do not hesitate in contacting us.

Overcoming the Stigma of Dementia

By 19th June, 2020 Dementia, Family Related Matters, Help Comments Off

Perhaps it’s the lack of awareness and understanding around dementia in the UK that creates the stigma or the public perception of people with dementia.

 

Dementia is an ever-increasing disease currently affecting 850,000 people in the UK, which is set to increase to around one million by 2025.

 

Currently there is no cure for dementia. It’s often misunderstood as just part of growing old when in fact it’s a disease of the brain. In our previous article we talked about why there is stigma around dementia, so how do we overcome this?

 

Having cared for people with dementia for over 36 years in our care homes, our team works hard with friends and families to do this. Our advice:

  • Be open
    Try to be open about the diagnosis with friends and family. Make sure you’re clear and direct. This also applies to your care givers, don’t feel ashamed about your diagnosis, it’s not your fault. The more information they have the better they will be able to treat and care for you.

 

  • Facts
    One of the key things to dispel the stigma around the disease is helping people to understand, so be factual when you talk to people. You could point them to the Dementia UK website or offer a pamphlet to help explain about the disease.

 

  • Support
    Make sure you have a strong support system around you, whether that’s friends and family, a support group or network. Sharing experiences with other people in the same situation can help with feelings of isolation and loneliness.

 

  • Connection and communication
    Staying connected with friends and family is vital at this time, keep up as many of your daily activities as you can. Ask for help if you need it and make sure you talk about how you’re feeling and how people can help. Often people want to help but are unsure of how, if you communicate it will help you and them.

 

At Grosvenor Lodge we understand more than most the difficulties having a family member with dementia can cause emotionally and socially. We’re here to support and advise you and your family at every stage. Please do get in contact if you have any questions or need support. We’re here to help.