Nursing home care for people with dementia and cancer - share your experiences

[molliep]

Do you have a family member with both dementia and cancer living in a nursing home? ​

Have you had to make a decision with the support of the nursing home to not access hospital for a cancer diagnosis or to seek treatment for your relative, or had to decide to not disclose a diagnosis of cancer to a relative because it might make them upset? What are your experiences of their nursing home care?

Below we are sharing some of the experiences we’ve heard so far from families, nursing home staff and healthcare professionals from Olivia Robinson’s Abbeyfield funded PhD research.


Family members spoke of not being able to access a hospital to receive cancer-related care for their relative, such as to confirm a cancer diagnosis or to seek treatment. This was often to avoid disclosing a cancer diagnosis to a nursing home resident and potentially cause them upset, or to ensure they don’t experience distress undergoing invasive procedures at hospitals:

• “He’s a panicker and a worrier and he would stay up all night if he knew he had bowel cancer...” (Staff)
  
  
• "A visiting GP to the home told his daughter that the gash on his face was also potentially linked to his cancer however due to him being unable to sit to carry out a biopsy because he might become distressed, they decided to not go ahead with the checks.” (Caregiver)

Although protecting the well-being of nursing home residents with dementia and cancer was at the centre of the decisions made to not access hospital, family members spoke of the difficulties they faced ensuring cancer-related symptoms were being efficiently managed by nursing home staff, and the limited support services for nursing homes because of their poor access to hospital care:

• “Honestly, it’s like walking with constant heartbreak, my Dad isn’t end of life, he is fine apart from the sores he currently has, but we can’t go back to the hospital to receive care there. The staff here are doing an amazing job, but they just aren’t trained to deal with things like this, we don’t know if the symptoms are getting worse if they are linked to something internally. It really is hard, there is just nothing there to support him”. (Caregiver)
  
  
• "I think the nurses here are fabulous, if the nurses in the hospital were working in an environment where they had to look after 40 people and dish out the tablets for 40 people they would soon realise that this is not a one man job. You know, you cannot expect that one person to be all over him and seeing everything, it’s not job possible, for anybody. There needs to be a half-way house, there needs to be someone with absolute cancer knowledge, end of life cancer knowledge, terminal cancer knowledge visiting care homes because you cannot. Just because there’s a nurse here they can’t look after 40 people…and I think they’ve got some lovely nurses here but they are not cancer nurses. Someone who sees it on a regular basis who can probably work out where he’s at…you know somebodies got a cancer that’s terminal, they should have access to the nurses, the regular nurse visits. There should be someone watching this space”. (Caregiver)
  
  
• "The one on his head you know, doesn’t seem to be bothering him massively, it’s got to hurt, and dad can’t speak properly. The one on the side of his nose frightens me because if that’s taking itself inwards into his sinus, into his jaw, into wherever. I would dearly like to know from one of the doctors that deals with cancer of that sort day in and day out, if they have dealt with a patient that can speak who's said at this stage it doesn’t hurt or it hurts like hell because we can’t get that from dad”. (Caregiver)
  
  
• “So yeah, we’ve got very competent members of staff that I know could set up a syringe driver today but I know we’ve got other member that can’t. So yeah there’s that lack of consistency here in terms of there isn’t that registered general manager here who would say "Ok, I will take the lead on that. I will make sure at 4 o’clock that syringe driver is ready". So, for example, I will do that but if I’m not here then there isn’t that, so I think that’s something we need." (Staff)

The management of cancer-related symptoms without specific training or knowledge can be challenging for nursing home staff. A common symptom of cancer is pain, though people living with advanced dementia may be unable to verbally communicate their pain, creating additional pressure on staff to be able to successfully identify, monitor and proactively treat symptoms:

• “You know you’ve got to take on a lot of non-verbal ques you’ve got to really be incredibly insightful to even have a guess at what’s going on. And it’s a lot of trial and error” (Staff)

Have you been through something similar? Or do your experiences differ? If you would like to add your own experiences and thoughts to this discussion please feel free to comment below.​