My Journey with Dementia – Ann’s Reflections & Story

I have structured the story of my journey with dementia around the Dementia Standards Pathway, which has five components: Preventing Well, Diagnosing Well, Supporting Well, Living Well and Dying Well. My journey was a constant battle to get support, advice and information, and for the majority of the time a very negative experience.

Diagnosing Well

Early in 2014 we visited our GP with my aunt because of her memory problems. After conducting some basic memory and cognitive tests there and then, she told my aunt that she wanted to refer her to the memory clinic and also said she would refer us to a new integrated care team who might be able to help. Upon reflection this doctor (who knew my aunt well including her extensive medical history) had already made her own mind up about a likely diagnosis and had begun to set the wheels in motion to get support. Before we had got to the stage of having the brain scan she had already been seen by a physio, occupational therapist, dietician, and had been introduced to local community social groups.

The memory service assessment started in April with a home visit from the nurse and a similar set of test to those the GP had conducted. This was followed by a brain scan and in November the nurse returned to give us the results. We were told that she had dementia, mainly vascular but with some Alzheimer’s and that as there was no specific treatment for this type of dementia she would be discharged back to her GP. We were given the phone numbers for social services and the Alzheimer’s Society and asked if we had any questions. We were stunned at the direct, factual and brutal delivery of this information. I asked about an occupational therapist that might be able to give us advice about making the house more user friendly for my aunt and was told that they would get back to me with this information, they didn’t.
We tried to contact social services a number of times but were on hold for 30 to 40 minutes each time, before giving up to try again later. We also found their email address on line and sent two emails but got no reply. We contacted the Alzheimer’s Society to get information about organising power of attorney after being turned down by two solicitors, they gave us good advice about doing it ourselves and with the help of my aunts GP we managed to get it completed.

Three months after the diagnosis of dementia we had to start arranging to stay with my aunt overnight as she had fallen out of bed several times. After developing extensive bruising to one of her legs the doctor decided to send her to hospital for an x-ray to exclude a fracture. There was no fracture but they decided to admit her to assess her mobility. When social services contacted me at home and I told them that the hospital had decided to admit her, their reply was “it’s no longer our problem then, you need to speak to the hospital social worker and make sure you get a mental capacity assessment before discharge.”

My aunt was in hospital for one month, she had a heart attack; hospital acquired pneumonia; bruising to both upper arms; delirium; UTI; constipation; and became doubly incontinent. Despite us requesting to be contacted day or night if she became distressed, we never were. She was given zopiclone sedation and morphine despite information in the GP letter stating that she was sensitive to codeine, tramadol and morphine. On discharge she was drowsy, confused, could barely stand or walk, had lost half a stone and remained doubly incontinent. Two weeks later she was alert, orientated, standing and walking independently, fully continent and gaining weight. This raises some questions. Was the admission was necessary? How much did it cost in monetary term to the NHS? And importantly, what was the long term effects on her and her quality of life?

Supporting Well

Social services arranged four visits per day, this was not based on any assessment that we were aware of. These visits were to wash and dress her, provide meals give medication and help her to bed. With the family, namely my sister and I, providing the other twenty two hours of care. Rather than this arrangement being a help, it was disruptive, particularly as the timings of the visits was unpredictable. Changing the care package was a longwinded process from care coordinator, to planning then costing and back to planning for a decision. The fact that she had to pay for her care in full left us wondering why this process needed to take three months and even longer to sort out the payments.

By this time my aunt’s long term GP. had retired and the change in care was staggering. Instead of being the gateway to health and social care they were more like the gatekeepers. Many problems we identified were dismissed or just not acted upon. Swallowing difficulties were dismissed as just part of the condition and mobility issues following a small stroke were met with a shrug. I suggested a physio assessment to see if any therapy would help and if not an occupational therapist assessment to work out how to get her from her bed to the toilet. The doctor suggested we should think about a care home and no referrals were made. A request for a home visit because of delirium was refused but a prescription for zopiclone was offered. It was not used as she had totally exhausted herself by that evening and slept for the next forty eight hours.

Desperate and failing to get any support we decided to try a care home, initially for one weeks respite but with a view to long term placement. The placement only lasted two days. On the first day they phoned to say she had fallen and broken her glasses, so we took in a spare pair for her. On the second day they phoned and asked us about her challenging behaviour. We were concerned, so we decided to collect her. On arrival the sitting room was very noisy, with most of the visitors watching football on both TV sets and my aunt was trying to escape from the home minus her hearing aid and glasses which were sat on her bedside table upstairs. It was hardly surprising that they were struggling to communicate with her and calm her anxiety.

Living Well

By this time we were very stressed, exhausted and desperate for help. I was already coming to the end of a course of counselling and had been prescribed antidepressant medication. We were fortunate at that time to have come across a notice in a local cafe about a dementia cafe organised by Admiral Nurses. The Admiral Nurses started giving us informal support and advice on everything from the referral process to fire safety checks to strategies of dealing with behaviour problems. They supported us for six months and encouraged us to reflect on how far we had moved forward. We went from desperately trying to find a care home to a decision to care for my aunt at home. This process was helped considerably by getting a referral to the psychiatrist and effectively circumnavigating the GP to gain access to community therapy services. My aunt’s medication was also changed and melatonin produced an immediate improvement in sleep pattern…for all of us!

We also changed the care package from the one arranged by social services to direct payment from another local agency, to timings that were more convenient and helpful for us as a family, and as carers and more supportive and dignified for my aunt. The carers would also use her life story book to reminisce. She enjoyed having her visitors each day and saw them as an extended family; she especially enjoyed the weekly evening visit and followed her meal with music, massage and manicures. We were able to gain the confidence to leave her with her carers, which allowed us a long break to relax and take some time for ourselves. Despite her many health problems and being virtually housebound her quality of life was good and ours was improving considerably. Later as her condition deteriorated we also arranged night cover once per week in order to get adequate rest ourselves.

Dying Well

My aunts general health had been declining gradually over many months and by December 2017 it was becoming obvious that the decline was progressing more rapidly and that she was reaching the end of her life. I was very frightened about how we would cope and where we would get support, as it had not been forthcoming. Throughout January and February we made several requests for home visits from the GP. Two were turned down but medication prescribed. On one occasion I threatened to call an ambulance after which they agreed to come out. I tried, and managed, to make contact with a nurse from the Christie Hospital who was a specialist in dementia care. She visited us at home and advised us about palliative care services in our area, she tried to contact our GP Practice by phone but she was not able to speak to a doctor directly.

On the 25th of February my aunt was visited by a friend who was shocked at her decline, and having just lost her husband and having been provided with palliative care services, she offered advice on what to do. The next day we contacted the practice and asked for a home visit, to have continuing healthcare funding fast tracked, a statement of intent and a do not resuscitate order put in place. The surgery sent a trainee who said she would go back to speak to the practise doctors, and contact the district nurses and community occupational therapist. Seven days later our care company contacted a community occupational therapist who visited within an hour and ordered a bed, hoist and sliding sheets. Eight days later the doctor was due back to complete the statement of intent but was off sick so we were asked to wait another two days. After ten days the doctor returned and completed the statement of intent and informed us they had made a referral to the district nurse.

After fifteen days we had to contact the district nurses ourselves and were told that they had not received a referral after all. Once I had explained the situation they arrived within the hour and also said they were contacting a Macmillan nurse and the palliative care team. The district nurses completed the continuing healthcare forms and the Macmillan nurse visited, arranged with the GP to change the morphine to transdermal patches and to prescribe modazolam for her anxiety and restlessness. The palliative care team visited regularly, phoning us at the start of each shift to check we were okay and reinforcing that we should contact them at any time if she needed medication or we had any worries.

Twenty one days after we asked our GP for help with my aunts worsening condition she died. The care and compassion from the palliative care team was exemplary and always prompt. After my aunt died they talked us through the process, checked our statement of intents prior to the doctor visiting and discussed funeral director plans with us.

Change is Needed

Putting aside the details of every single battle and looking at the overall picture there were three main areas of practise that I believe need radical change:
1) Communication- This should be a two way process, as listening can be more important than talking and the language we use is also important, it should be appropriate to the individual situation.
2) Respecting and valuing family carers – Unpaid, often family, carers are the key workers and the care coordinators, they hold the most knowledge about the person with dementia, and spend the most time with them observing, noting changes and adapting with them as their dementia progresses. This experience and knowledge should be valued.
3) Planning – Forward planning can save everyone time, money and distress. Crisis management limits options leading to poor decisions and poor quality of care. There are no opportunities for blue sky thinking in these situations.